Previous Updates

Update 9/22/08

The kids are still doing good. Hailey has still been making improvements and has even been several days without having a single seizure! She has also stopped thrusting her tongue in and out constantly, so now we have all of her involuntary movements under control. Although the last couple of days, she has been having a few more seizures than usual and we’re not sure why, so I have emailed the doctors in China. It is nowhere near as bad as before, but today she had about 20 and yesterday about 10 (compared to 5 or less a day since we’ve been home). We’re just a little concerned because she has been doing so well and it was great having her seizures almost completely under control. We’re eager to hear what the doctors in China have to say. They have been very good about keeping in touch and following up with Hailey.

We are still waiting to hear from the doctors in New York about Carter and have to say, we are getting a little frustrated. We have left several messages and the doctor that heads up the trial has yet to call us back, but we understand that he is very busy and I hear he travels a lot. The people in his office did tell me that he will be back this week, so hopefully we will hear something soon. Our hopes are that we can go ahead and take Carter to New York to get evaluated for the study. We are still waiting for some of his genetic tests to come back, but figure if we could go ahead and get him evaluated there, he would be one step closer. On that note, we finally got Hailey’s genetic tests back. Of course, we know that she has Batten disease, but there are several different mutations of the gene that can cause the disease. It turns out that Hailey has 2 mutations, both of which cause Battens. The doctors think that is why Hailey has progressed so quickly. We will get Carter’s genetic tests back in a couple of months and are thinking (and hoping) that he only has one mutation, as he has not progressed as quickly as Hailey. We will keep everyone updated on how Hailey is doing and what the doctors in China have to say about her break-through seizures. Also on any new developments for Carter’s treatment. Thank you all so much for taking the time to follow our story and for everyone’s support. Hope to see everyone at our upcoming benefits!

Update from Home! 8/29/08

As promised, here are some links to our recent news interviews upon returning home:

Shepherdsville girl doing better after controversial treatments in China

Hailey Goranflo arrives home after successful treatment in China | TOP STORIES | WHAS11.com | News for Louisville, Kentucky

Sick Girl Returns After Stem-Cell Treatments – Health News Story – WLKY Louisville

WAVE 3 TV Louisville, KY | Shepherdsville child returns home after stem cell treatment in China

Hailey and I are finally home… for now! After a 12 hour long flight and 6 hour long drive home, we made it back Thursday at 2:30 am. Hailey slept the entire way home, so I was get a little rest as well. We’re still pretty tired though,  trying to get readjusted to the 12 hour time difference and getting over a little cold. It was a very long 7 weeks, but so worth it. We are so happy for Hailey, her quality of life has improved so much.

I’ve said it before, but I would like to sum up all of the improvements that we’ve seen in Hailey. The biggest improvement is the major reduction in seizures. Hailey went from having hundreds a day (so many we couldn’t even keep count) to 5-10. Today was the first day in years that she only had a couple of “drop” seizures. Her breathing has also improved dramatically. Before, her oxygen levels would drop and she would have to be on oxygen several times through-out the day. Other than the plane ride, she hasn’t needed oxygen since a few days after arriving in China. She is awake and so much more alert most of the day now, rather than sleeping 20+ hours a day. She is much stronger and trying to participate in her therapy. She is not as tense and stiff. She gained 6 pounds and grew 3 inches in 7 weeks, which she needed! She no longer tremors or shakes all day. Most of her involuntary movements have stopped, except for her tongue thrusting. She is still trying to vocalize and is showing more facial expression. Hailey just seems to be happier and feel so much better. Going there, we weren’t expecting much. We just didn’t want to get our hopes up and be let down, we would have taken any improvements. We are very impressed at what the doctors there have done for her.

China was a very emotional trip for me. It was very difficult at times, but I would just have to remind myself why I was there. This was a life changing experience for us all. It was hard being separated from each other for so long, but absence really does make the heart grow fonder! I was so happy to Neil and my little Carter. He was very happy to see Mommy and Sissy again too. It was so funny, he doesn’t really understand what’s going on and when he saw us, he looked a little confused and gave me a look like “where have you been?”

Leaving China was not quite as hard as going, but it was tough saying goodbye to all of the friends I had made there. I met people from all over the world, that were dealing with very similar issues. Some of the stories were very sad, but they were all in a very good state with their sickness. Like us, they had learned to deal with it the best they could and do whatever they could. They knew what it was like, not having anywhere else to turn. Almost all of the other patients I spoke with noticed some kind of improvements. I am especially going to miss all of the doctors, nurses and therapists. For the majority of the time, Hailey was the only child there and they doted on her and loved her like she was their own. They would tell me how lovely she is and how her skin looks like milk and her hair looks like gold. She was always the first patient they checked on in the morning and anytime anything was wrong, they were right in there. I couldn’t thank them enough for everything they did for her.

Hailey and I will have to go back to China very soon, probably in December or January. The doctors have assured me that next time, Hailey will get even better treatment. Like the clinical trial in N.Y., they have been working on gene therapy and it will be available for Hailey’s second round of treatments. So she will be getting stem cell injections plus gene therapy. The doctors couldn’t tell me a lot about it, but they are very hopeful. We are very eager to see how well she does after additional trips. I will stay in very close contact with the doctors there now that we are home. They emailed me just this morning to make sure we made it home safely and to see how Hailey was doing.

We still have no word on Carter’s treatment and to be honest, Neil and I have been back and forth as to what to do. We were counting on the trial in N.Y. to start soon, but just got word that it may not start for another 6 months. The doctors there told us 6 months 7 months ago. It would be different if we knew he would be accepted, but we would be devastated if we waited that long and wasted precious time and him not even been accepted. We are waiting to talk to the doctor again ourselves and hopefully will be able to make a decision from there.

I can’t tell you how good it feels to be home. It feels good to be back to my little town of Shepherdsville. China was a big culture shock for me. Beijing has a population of 17,000,000! I learned long ago not to take my children for granted, but I now have a new appreciation for everything else in life. While I feel so lucky to have been born in the U.S., I wish that our country was more open to stem cell research. The possibilities are endless and so many lives can be improved, if not spared. Stem cells may not have cured Hailey, but they have improved her quality of life so much and even that means the world to us. Before, we didn’t think Hailey had much longer with us. Now we think that her life will be extended and she may get a chance to see the cure. As I’ve said, it can take several months to see the full results of the stem cells, so we look forward to even more improvements. We will continue many of the meds they had her on there and of course, the daily physical and occupational therapy. I will be sure to keep everyone updated with her progress. Thank you to everyone that helped make this possible for Hailey, we feel like we have a piece of our daughter back. We had too many people try to talk us out of going to China, for a variety of reasons. I’m so glad that we didn’t take any of that advice and followed our hearts.

I will have links up soon of our recent news interviews, since arriving home. Fundraising will continue and we will have more information about upcoming benefits soon as well.

Update 8/22/08

5 more days! We’re finally counted down the day rather than the weeks. Hailey and I will be home Wednesday evening and we can’t wait! Just to be home and see Carter again will mean so much to me. Being in China for 7 weeks has given me a new appreciation for a lot of the little things that I once took for granted.

Hailey is doing very good today, though the last 2 days were pretty bad. Wednesday I noticed that Hailey did not look very good. She was very pale, had dark circles under her eyes and just had a “yucky, I feel awful” face on. They did some blood work and found that her white blood cell count was high, meaning that she had some kind of infection. They suspected she may have gotten some fluid in her lungs and developed pneumonia. They started her on antibiotics and she was a lot better by the next day. Now, she is back to doing much better again.

Hailey did so well with her therapy today and even yesterday, when she wasn’t feeling very good. She was really trying to participate in all of the exercises and she just isn’t as limp anymore. Today… I almost got a smile, it was so close!!! We were in occupational therapy and she just looked really happy, a look I had not seen for several months. Her eyes were bright, she was so alert and was trying to talk to us. We were playing with her and although we could tell she was very happy and was feeling good, we just couldn’t get it out. I know in time it will come and we will see Hailey’s sweet little smile again soon. We still have a long way to go before we see the full results of the stem cell treatment, so I think that we have a lot to look forward to and finally… some hope.

Update 8/16/08

Well… less than 2 weeks to go! Hailey and I are so ready to come home. Neil left yesterday and while it was great having him here for that week, it was very hard to say goodbye again. I am so glad that he got the opportunity to see first hand the treatment that Hailey is getting here. The first thing he noticed was how big she has gotten. She has gained several pounds here due to everything they have been giving her, including growth hormones for the stem cells. He also noticed right away how much more alert she is and the huge reduction in seizures. He couldn’t believe how still she was, without all of the involuntary movements or tremor. Seeing her improve is such a blessing for us.

The therapists, doctors and I have also noticed that Hailey has gained muscle tone. This is mainly do to the intense therapy she has been getting 6 days a week. The doctors have also been giving her Creatine, which is used by bodybuilders to build muscle. Hailey is much stronger than before. Another improvement is that Hailey’s hands are no longer clenched. Before she would keep her hands balled up in a fist all day, so much so that her little hands were always so sweaty. Now her hands (and the rest of her body, for that matter) are much more relaxed.

Hailey will receive her 4th and final stem cell injection Tuesday. She has been doing very well the last few days, though she has been a little tired. She has been sleeping more, though still not as much as before. Hailey has good days and bad days, like most of the patients here. The majority of Hailey’s days here have been good, with very few bad days. Even her bad days here are better than her good days at home.

I have spoken with the doctors here and they have agreed to let Hailey come back sooner than they usually recommend. They usually suggest 6 months or more, but Hailey and I will be back in 3 or 4. We will have another meeting on Monday to discuss this in further detail. While I am not looking forward to coming back, I know it is best for Hailey and I would do anything for her. Being here in China has been very difficult and I am just so ready to come home. I miss everyone terribly, especially Carter. I really enjoy the quality time that I have here with Hailey, but I miss Carter so much. Still no word on Carter’s treatment, we are still anxiously waiting. Hugs and kisses to all of our friends and family, see you all soon.

Update 8/9/08

Only 3 weeks left to go… it’s all downhill from here! Hailey is doing well today, though she has been very tired. The previous two days have been a little rough for her. She was running a temperature, having more breathing problems and a few more seizures. Still no where near as bad as before we came. Today though, she is much better. Only a handful of seizures, no breathing problems and her temperature is normal again. The doctors have assured me that all patients have ups and downs with the treatment. They still think she will be much better after completing the treatment… I do too. I have also spoken with the doctors about coming back sooner than they usually suggest and they are considering it, due to Hailey’s condition. Hopefully we’ll be back in just a few months.

I also wanted to share with everyone the results of our recent fundraisers. The local pubs (O’Shea’s, Flanigan’s, and Brendan’s) raised $5,000! Thanks to everyone that participated in that event, we feel extremely blessed to live in such an amazing community that would do something like that for us. This has taught us so much about people and how caring and compassionate people can be, even to complete strangers.

The Cute Kid’s Beauty Pageant did very well too. It took a lot of hard work, again mainly from complete strangers, but they raised $7,530 that day! Thank you so much to everyone that organized the event (especially Jennifer!) and to all of the contestants and their parents. Congratulations to all of the winners and I hope that you all had a wonderful time! It was all for a great cause… Hailey and Carter.

Neil has flown in to see first hand the treatment that Hailey is getting. Carter is at home with Grandma. Neil arrived today at 4:30 pm. and he too was very shocked at just how different China is. He will stay for one week, which is great for me and Hailey. I could really use the moral support, help and company. As I’ve said, hospital life is very lonely and can be a little depressing (too much time to think about everything). I have never been more happy to see him. He was so happy to see Hailey and noticed all of her improvements right away, he is very impressed with her progress. The doctors here really can make miracles happen. While the changes may be very subtle to others, they are major accomplishments to us. She is breathing so much better, seizures are reduced, her tremor is nearly gone, her involuntary movements are reduced, she is vocalizing more, she is awake and alert more and she is much stronger. We can only imagine how much better she will be after several treatments here.

I know everyone is wondering if we are going to attend the Olympics! No, unfortunately it is almost impossible to get tickets now. I have however driven past the stadium and have seen many of the Olympic decorations they have put up all over the city. They have really done a great job of cleaning up city and getting ready for the Olympics. Even the air quality is so much better. They have beautiful Olympic flower arrangements and statues everywhere. I know it’s taken years of work, but even even in the four weeks that I’ve been here, they have done so much and it is quite a remarkable city. I don’t get out much, but even at Walmart the other day, I saw many of the athletes. It is so awesome to be here for all of this, though I wish it were under different circumstances. Maybe next time we come, Hailey will be much better and we can get out more. Beijing is a beautiful city and I wish that Hailey and I could get out and see more of it. But for now they want Hailey here, in the hospital, getting better… and I agree.

Update 8/5/08

Hello all! Hailey and I have been in China for more than 3 weeks now. I can’t believe we’re more than halfway done. Time has really flown by, because of our very busy schedule. I can’t wait to come home to see all of our family and friends… especially my little Car-Car! Though when we return home, I hope to come back very soon. As I have said before, the doctors like to wait 6 months between treatments, but I will try my hardest to convince them that we need to come back sooner., due to Hailey’s condition. I know it will be very hard, but hopefully we will be back in just a few months. I just want be as aggressive as possible to get the maximum results from the treatment. The doctors at home have made it clear that they don’t know how much time Hailey has. Whereas the doctors here seem to think very differently, they think that they can really help her… as they have already. The doctors at home have even said that they have “run out of options.“ I’m so glad we came here, where there are so many more options for her.

Hailey had her 3rd stem cell injection today and of course she did very well. Overall Hailey is still making major improvements. Today, she has only had about 5 seizures, down from hundreds! She is having more involuntary movements (head-turning and tongue movement)the last couple of days, but the doctors have assured me that all of the patients have good days and bad days. Not that this is a bad day, but there have been better. She is still doing so much better than when we came. She is still awake all day, whereas before she would sleep more than 20 hours a day. Now she doesn’t want to go to bed! She has still been vocalizing a lot and she is getting so much stronger from all of the therapy. Her head, neck and arms are so much stronger and we are hoping that she will be able to hold her head up again by the time we leave. Her breathing is also still greatly improved. I am just so impressed with the seizure control. Even though they have reduced her meds, seizures have reduced by over 90%! I can’t believe it and I am so happy for her. That had to be so hard on her, seizing all day.

Our daily schedule is as follows: wake up at 6 am. for nurses to do blood pressure and temperature. Then one of the resident doctors come in to evaluate her. Following that, another resident doctor comes in to evaluate. Then all 15 nurses come in to evaluate. Then we go to Traditional Chinese Medicine for Hailey’s massage. The Chinese believe that that massage can be very healing. They massage her hands and feet a lot. After that, we’re off to intense physical therapy for an hour. We come back to the room for an hour, then we are off to intense occupational therapy for an hour. They work every single muscle in her little body, I’m very impressed.  Then we come back to the room to start all of the I.V.’s… about 7 a day, which takes several hours. They are all for meds and they also bring me 4 cups of pills to give her everyday. They are mostly vitamins and things to help with the stem cells…. mostly food for the stem cells and things to support the brain and nervous system.. One of the strangest things they have her on is Deproteinised Calf Blood Serum! Sounds very weird, but I asked the doctors what it was for and again, it is food for the stem cells and helps with brain development. Many of the other patients are on it as well. I tried researching this on the internet , but could not find very much, most of it was in Chinese and were studies, so I had trouble understanding. But I guess they use it a lot here. As I’ve said before… I’m just trusting them, because obviously something they are doing is working!

I on the other hand have been a little sad. A lot of the friends I have made have completed treatment and gone home. There aren’t too many patients left… only 12 rooms and there is only one other American family, from Oregon. Despite of that, I am still in very good spirits. I’m a little lonely, bored and homesick, but I can suck it up for Hailey. As long as she is doing better, that’s all that matters.

Still no word on Carter. We are still waiting to hear from Cornell, in N.Y. Hopefully we will hear something very soon. I am very worried about waiting… as I’ve said, time is of the essence with Battens. If all else fails, we always have China and I know he will be in great hands here. Of course, we will continue to update. So until next time… Please continue to pray!

Update 7/25/08

We’ve been in China a little more than two weeks now and Hailey is still doing great! She received her second stem cell injection this morning and did very well. The doctors said that we should notice even more improvements in a week…. wonderful news, I can’t wait! Hailey has been vocalizing more and more everyday and trying to communicate with me. Her neck is getting stronger from therapy and I am hoping that she will be able to hold her head up soon. Her involuntary movements (head-turning and sticking her tongue in and out) are even less now and she is awake more often and much more alert. She is having a few more seizures today though. The doctors are still tweaking her seizure medications and trying to find a good dose for her, so hopefully we will regain seizure control again soon. But overall she is still doing much, much better.

I also want to make everyone aware of our plans for Carter. A couple of weeks ago, we received some potentially exciting news. The kids’ neurologist in Cincinnati has been in contact with the doctors in New York, at Cornell. The doctors at Cornell are working on a cure for Battens and they are “interested” in Carter for the trial!!! The trial is for Gene Replacement and they will actually replace the defective gene that causes the disease. We are ecstatic that Carter has the opportunity to be a part of the study, something we never thought would happen. They think that he would be a very good candidate, because he is not too far progressed in the disease. Originally, we were told that the chances of him being accepted were slim to none. While this is very exciting news for us, it is still not definite. He still has to be evaluated and the trial will not start for another couple of months.

So for the moment we have canceled Carter’s trip to China. I cannot even begin to explain how difficult that decision was for us. It was not easy, we have thought and prayed long and hard over it. Now we just hope that we have made the right decision for him. While Cornell will obviously be the better treatment, he still has to get accepted. We hate that we have to wait around… not knowing what will happen and wasting precious time. We will keep the website updated as far as Carter’s plans go, hopefully we will know something in the next couple of months. Carter is still doing very well and has not shown any signs of regression yet, though his seizures are getting to be more frequent. We ask that everyone please pray for him to be accepted to the trial.

…But fundraising must continue! So far we have raised just over $101,000!!! Amazing… thank you all so much for all of your hard work and donations! Hailey will need to come back to China several more times within the next couple of years. Typically they suggest three trips, six months apart. Hailey is obviously an extreme case and I am hoping to convince the doctors here that we need to be much more aggressive with her treatment. I will do what ever it takes and come here as many times as it takes… until she is better. Hopefully we can come back in just a few months. Carter too, will need money for travel expenses to New York, though the trial itself will not cost anything. We are also considering taking to Carter to China after the trial in New York, to get even better results.  These are the most difficult decisions that anyone could ever face. Everything is in God’s hands and we are just going with the flow.

FUNDRAISER INFO: There will be several fundraisers on Monday, July 28th. Three local restaurants have graciously offered to donate 100% of their proceeds from 11 am.- 4 am.! That is awesome and so generous of them to do that for the kids. The restaurants are O’Shea’s Irish Pub (956 Baxter Ave.), Flanagan’s Ale House (934 Baxter Ave.) and Brendan’s Restaurant and Pub (3921 Shelbyville Rd.). Please come out to one of these restaurants Monday… to have lunch or dinner, some drinks, and of course to support Hailey and Carter.

Just a couple of other things to mention, that I have been getting several emails about… The July 12th benefit unfortunately did not go very well. Everyone worked so hard on it, but it was just too hot that day. We did still manage to raise about $3,700 that day though, which is great. Also, I want to correct myself. The type of stem cells that Hailey is getting are Neural stem cells… not embryonic. These cells are more developed and much better and safer to use. There is NO risk of these cells forming tumors (as I’ve noticed people posting about on other sites). Just wanted to clarify and apologize, as I was misinformed.

update from China 7/21/08

I have great news to share… Hailey is doing so great! We cannot believe all of the improvements we have seen already. I mentioned before that her breathing is much better. Now, her seizures have also dramatically decreased, as have her involuntary movements. Before, her head would turn back and forth constantly and her tongue would go in and out. Now, all of the movements and even the jerks (seizures) have noticably decreased. Hailey has even been trying to talk more!!! I read books to her and sing to her and she makes noises, trying to communicate appropriately. Still no smile yet… but we’re working on it. I’ll get one out of her before we leave!

Hailey is doing well with all of her occupational and physical therapy. It is very intense and she is excausted afterward. She even cried and screamed at her P.T. because she had her in an akward position. While most parents can’t stand to hear their children cry… I loved it and it actually brought tears to my eyes. She is starting to show emotion again.

Hailey is also sleeping much less. Before she would sleep nearly 20 hours a day. Now she is awake all day and very alert, looking around and making noises. She also sleeps well throughout the entire night.

We came to China not really expecting much… we just didn’t want to get our hopes up and be let down. But I have to say, I am very impressed with all of the improvements we’ve seen already. I cannot wait to see how she is after the full treatment. The doctors are very happy with her progress and they think there are more improvements to come. This is so exciting!

Hailey will get her next injection Thursday. Again, it usually takes several months to see results from the stem cells (that’s how long it takes them to grow), but you can notice subtle improvements immediately. They are also giving her medicines to activate her own stem cells, called self stem cell activation.

The doctors here have high hopes for her and we are already planning our second trip back. I am very happy with the treatment she is getting here. The hospital is not the greatest, or the cleanest, but the treatment is remarkable. They usually like for the patients to wait 6 months between treatments, but with Battens, there just isn’t that kind of time and I will see if we can come back sooner.

Also wanted to remind everyone about the Cute Kids Contest, August 2nd. We could use some help distributing registration forms and people to work the benefit. Another fundraising idea that we’ve had is to sell home interior candles. If anyone is interested, please contact me directly for more details. I’ll also be posting new pictures of Hailey and I in China soon, so keep an eye out for those in the ‘Gallery” section. There will be a new video on whas11 soon as well. Thanks again to all!

Ni Hao- Day 6 in China

Ni Hao and greetings from China! As many of you know, Hailey had her first stem cell injection today. Everything went very well. They came in and got her at about 10 am. and she was back by 10:12 am.! I couldn’t believe how quickly they did it. She is doing very well now… a little tired from the medication, but good. She has to lay flat on her back for 6 hours after the injection.

Hailey also started occupational therapy today. She did very good with that and was even following some of the therapists commands. She will start physical therapy on Thursday. I also spoke with the Traditional Chinese Medicine doctor today, who is cleverly named Dr. Wisdom, which I’m sure is not his real name. It’s funnythough, all of the nurses and doctors here give themselves American names, to make it easier on us foreigners. Anyway, the doctor said that he will see Hailey everyday and try some more medicines, do massage, and maybe some acupuncture.

While it is too soon to see any results from the stem cells (this could take several months), I have noticed that Hailey’s breathing is much better because of one of the medications they started her on. Before it was very shallow and her oxygen levels would drop periodically. Now she is breathing much deeper and her oxygen levels remain normal consistently.

I had the opportunity to see the Forbidden City on Sunday. It was the most beautiful, amazing place I’ve ever seen. I will have pictures up soon. I went with an Australian lady, that is here with her mother and a Canadian man, that is here with his brother. It was huge and took us hours to get through, but we had such a good time. Hailey stayed here and slept the whole time, while my neighbor, from Minnesota, and the nurses watched over her. It was nice getting out to see Beijing a bit… it’s an amazing city. I’m starting to make more friends now and it’s fascinating to meet all of the different people here in the hospital and hear their stories, which are all very heartbreaking. They are all great people and with some there is a language barrier, but we still smile and say hi. We are all here for the same reason… hope.

BTW- There will be 3 new videos on www.whas11.com. I gave an update on Hailey, a quick tour of the hospital and outside, around the hospital. That camera was a great idea!

Update from China 7/11/08

Day 3 in China and Hailey is doing well. The head neurologists came in today with the other neurologists, doctors and nurses. They told me that Hailey is the worst Battens child they have treated, but they did say that they think they can help her. It was very encouraging to hear them say that there is hope for her.

I have had a chance to meet some of the other patients and caregivers. Everyone here is so nice and helpful, which makes everything so much better. The hospital is small, there are only six rooms in the South Ward, where we are staying. All of the other patients and caregivers say they are doing much better. They have all noticed improvements after the treatment. They treat a lot of Cerebral Palsy patients here, as well as Parkinson’s, spinal cord injury and other rare diseases. This is a neurology hospital and they treat everyone with stem cells. Hailey will get 4 injections over the 7 weeks. The doctors said today that Hailey will get her first injection Tuesday, after another meeting on Monday regarding the stem cells.

Hailey did have some trouble today. She had an i.v. in her foot and it became very swollen, along with her entire leg. Her foot was discolored and her foot and leg were hard. Hailey was crying, which she has not done in some time, so I knew she was in a lot of pain. This has happened at a hospital at home before, but not as bad. Hailey has been stuck so much in her short life that she has bad veins now. They gave her some pain medicine and put a wrap on her leg and she is much better now. They had to put a port in today. It was a minor surgical procedure that took about 20 minutes. It is an i.v. that is in her chest, close to her neck. There are some risks to it, though most of the other Battens children have had the same procedure. They will take the port out before we leave, but Hailey will have to have another one put in when we return home. That way she will always have an i.v. readily available when needed, which is very important in emergency situations.

I am doing much better now, settling in a bit. Though it is still very hard being so far away from home, in a foreign country. Still trying to adjust to the time change too. I went to the bank and Wal-Mart yesterday, that was interesting. The Wal-Mart was huge, two stories. They have a lot of the same things as we do at home, but most of it is in Chinese of course. I had my translator with me and she was a big help. The Olympics will be starting soon, so I look forward to seeing more Americans here.

I wanted to mention that you will soon be able to go to www.whas11.com to see video of us. One of the reporters was kind enough to let me borrow a small camcorder. She will be starting a blog about our journey and I will post a link soon. Also… don’t forget about the benefit this Saturday at 2 pm. at the park. More info is available on the site. We could still use more volunteers for this event. If you would like to help, please arrive around noon. Thank you all so much for your continued support.

Update from China

Miranda and Hailey leaving the ground from Chicago O'Hare 7-8-08

We made it to China! Hailey and I arrived in China at 3:30 pm. today, that’s 3:30 am. our time. We are 12 hours ahead here. The flight was long… very long, but good. The people with United took excellent care of us. It took us about 13 hours to get here. Hailey did very well on the flight and the drive to the hospital, though she is very tired now.

The nurses and doctors came in immediately to see her when we arrived. They did a routine exam and started Hailey on I.V. fluids and a medicine to help with her shallow breathing. They will do tests tomorrow (blood, urine, stool) and they will be starting all of Hailey’s therapy (physical, occupational, and speech). They said that Hailey will probably get her first stem cell injection early next week.

I am so nervous about being here, especially being alone with Hailey. I cried most of the way here. I miss Neil and Carter already and know that it will be a long 2 1/2 months away from them. All I can do is pray. Pray that we are making good decisions and pray that the treatments will help them.

China seems very different from home. Everything looks very old, the buildings and everything. The first thing I noticed, which I had read about, was the smog. The sky is so gray here. You can see the smog in the air all around, especially around the buildings. There is an incredible amount of people here and everyone has been very nice to us. Of course the language barrier is a bit difficult. Most of the nurses here speak decent English, so that’s good. A few Chinese people that don’t speak English have tried talking to me, but in very slow Chinese, like I might understand them better… not so much.

I will be updating often and am very eager to see how Hailey will do with the treatment. Thank you all so much for taking such an interest in our story. We are truly grateful for all of your support, encouragement, letters and of course all of your prayers. Hopefully I will be writing soon with some good news.

(Go to the Photo Gallery page and look for “MORE PHOTOS! Hailey’s First Flight” to see the day chronicled.)

Flight arrangements underway

Congressman John Yarmuth (Kentucky 3rd District) and his office have been tremendously helpful in making arrangements for Hailey to get to China. We are grateful to WAVE 3 in Louisville for taking our story to his office.

Rep. Yarmuth told WAVE 3 “You have to do what you can. She’s not even in my district but she came to us for help and we tried to do everything we could for her. And my staff has done a wonderful job. Their hearts went out to her and they’ve been meeting with the family and talking with them consistently.”

Everything looks set to have her in China by the beginning of next week so that the first round of treatments can begin. Hailey will be the fifth child with Batten’s Disease treated there in Beijing, and three out of the four that have been treated are doing better. It’s nothing miraculous but the children are stronger, seizures can be reduced and are even smiling again… which would make everything well worth it.

Our sincerest thanks go to U.P.S., without them we don’t know how we would have gotten all of our belongings back from the hospital in Canada. Because the medical flight was so small, there was no room on board for all of our luggage… 2 months worth, including thousands of dollars worth of Hailey’s food and supplies. U.P.S. was able to retrieve everything in a matter of a few days. Rep. Yarmuth and his staff are also working to get the $4000 refunded from Air China for the tickets that were not used, but that has not happened as of yet.

ALL THINGS WORK FOR THE GOOD…

In the process of all the traumatic events of the last week, our story has made national news including CNN.com and FOXNews.com. If anything good came out of this whole mess, it’s that we have raised so much awareness for this terrible disease. Consequently, donations and letters of support have streamed in from all over the place, including Vancouver (Canada), New York, Illinois, Indiana, Texas, Florida and, of course, Kentucky. Thank you everyone for your continued support, your kind letters, your prayers, and your donations.

We will keep you updated on the total amount raised by adding a NEWS FACTS page to the site. Also on that page will be other important factual data for news agencies to refer to as we have noticed small discrepancies showing up in the growing number of stories. It’s understandable that as things mushroom reporters can do their best but still not have a spelling, location or amount correct. So, we want to help by bringing all the important facts in bullet form that can be easily updated and accessed.

LETTERS FROM CANADA

We want to be clear that no hard feelings are harbored toward Canada or its citizens due to the nightmare that unfortunately ensued there. Our comments on the site as well as Miranda’s in the news interviews were directed toward the airlines for their shortsightedness and the doctor for what was inarguably BAD bedside manners. Medical professionals know better than to add insult to injury, especially in a situation where life and death are at stake.

We have received several upset remarks from Canada (though the letters of support far out number them). While we chose not to publish these on the site, we hope that anyone who was offended will accept this clarification as our apology for any misunderstandings. The doctor’s careless remarks, we’re sure, do not reflect the attitude of the country or its medical industry as a whole.

That being said, we wish to again express our thanks and heartfelt gratitude for the numerous encouraging letters and donations that have come from the caring citizens of Canada.

DONATE TO HAILEY & CARTER HERE

Hailey’s flight makes national news

Hailey’s first trip to China was planned to begin June 24^th but ran into complications that are now making national news. After leaving Louisville, stopping through Chicago and then arriving in Vancouver (Canada) the airline panicked over Hailey’s congestion. Hailey has lost the brain function to clear her own throat and Miranda and Neil have to drain it periodically. Knowing nothing of the genetic disease she is battling, two separate airlines would hear nothing about it and denied them continuance to China.

After being forced to go to a local Canadian hospital (where at one point the doctor had the audacity to laugh and joke about American health care!!!) Miranda and Hailey were forced to board a Medivac plane back to Louisville, only to be stalled in Spokane, WA where the plane had mechanical problems. They then had to wait, in the local hospital, for the pilots who had already logged in their maximum flight time of 12 hours per day.

In short, Miranda has lived her own version of the movie “John Q” for the past SIX DAYS!!! That’s the movie where Denzel Washington ends up taking a hospital hostage because the insurance company refuses to pay for life-saving treatment for his dying son. No, Miranda didn’t hold anyone hostage, but she came close to being arrested after losing her temper with clueless airline personnel.

As of now, Miranda and Hailey are back in Louisville and it looks like by the end of next week they’ll be in China one way or the other. Congressman John Yarmuth of Kentucky stepped in to help and there are now a couple of options they’re trying to nail down.

PLUS, in the process the story has been aired in Vancouver, Houston, Rockford (IL) as well as Louisville. In fact, the story is now on the national feed for Fox making it accessible to news stations across the country . This means more exposure for Hailey and Carter as well as the organizations battling the disease (whose information can be found on our Links page). Already, we have seen additional donations coming in due to the exploding coverage.

Call your local news if they haven’t already run the story and tell them to view some of the following links! These are just a few of the news stories already aired. Please check out the “In The News” section for even more.

WLKY Story

WHAS Story

FOX Story

WAVE 3

DONATE TO HAILEY & CARTER HERE

June 9th, 2008-

Thank you so much to Ali Millard, everyone on her committee and everyone that came out to support us Saturday night. With their help, we raised $7,225! We had such a good time at the benefit and everyone was so nice to us. It is great to know that so many people genuinely care about us. We know now how much work goes into organizing a benefit and we thank everyone that played a part in this event.

We have all of Hailey’s $50,000 raised. We had our date set for July 8th, but Hailey has not been doing well lately, so we moved the date up to June 24th. Hailey and I will be flying to China in 2 weeks! It seems like we raised the money so fast, we really weren’t expecting to have it all that quickly. The community has been amazing in helping us raise the money.

Let’s keep the momentum going and get Carter to China soon too! Already he is at $10,000 and he needs a total of $35,000. We have several other benefits coming up this month and think we’ll have his money in no time. Neil will be taking him for treatment as soon as his money raised, which we are hoping will be in July. We want to get him over there and start the treatment, before he starts regressing like Hailey. He is still doing well, no more seizures or other problems, and we want to keep him this way.

Thanks again to our entire community for all of your support. With your help, we have a real chance at saving our children’s lives. I will keep the website updated as we get more info about our other upcoming benefits. I will also update in China, as to how our trip is going. Hopefully I will have some great news to post.

May 24th, 2008-

Great news- We raised $8,222 at our benefit today! We worked so hard on that event, but it was all well worth it. We had a great turn-out and a lot of fun. This would not have been possible for us today without everyone from our church and our family and friends. All of the volunteers were amazing today and did a wonderful job. Everyone worked so hard and we cannot tell you all how much we truly appreciate everything. We could not believe all of the people that came out to support us today. Thank you all so much from the bottom of our hearts.

Hailey and Carter had a blast at the benefit too. We really wish that Hailey could have enjoyed it more, but she slept through most of the benefit. Carter, on the other hand, got to do it all. We loved seeing him have such a great time today and he enjoyed everything… especially the cheerleaders!

We have also had a very good response from being on the local news so much the last couple of days. We have had a ton of hits on the website and lots of deposits to the trust. With the benefit and all the deposits at the bank, our total for the day was almost $10,000! So now our grand total is nearly $45,000! We are nearly there for Hailey’s treatment. We do have Hailey’s date set for China. We will be going July 8th. While I am very nervous about going to China, I am also very eager to get her the treatment and pray that it helps her. While Hailey and I are in China, fundraising will continue for Carter and he will go as soon as his money is raised.

Thanks again to everyone that attended today and to all of our volunteers. Be sure to check back with us in a couple of days. We’ll put all of the recent news clips and newspaper articles on the site, including the one’s from today’s benefit. I’ll also update our total. We’re hoping to get an even bigger response over the weekend… I’ll let everyone know.

April 22nd, 2008-

We had a blast at the Houston benefit! Our family worked so hard to make that happen for us and it was great. We would like to thank Michelle, Darrell, Mike, Erica, Amanda, Amber, Austin, Lauren and Henry, Bethany, Cheryl, Jeff and Michele, Sarah and James, Jason, Corey, Uncle Bobby, Uncle Roy, Grace, Robert Reed, the rest of our family and their amazing friends, all of the awesome bands, Rick Neilson, Mulligan’s and More and all of the employees, all of our sponsors and everyone that came. You all made this benefit a huge success for us and we truly can’t thank you enough. We love you all!

We raised about $7,000 that day, which brings our total to over $22,000! Things are really starting to take off now. We are so happy that we are getting closer to the treatment our children so desperately need. Fox News Houston also came out to the benefit. In case you missed it, you can see some of the fun in the “in the news” section. We will have lots of pictures to add to the gallery soon as well.

April 17th, 2008-

The Louisville benefit was a success! We made $4010, which brings our total to over $13,000! We’ve still got a long way to go, but the way things are going, we’ll get there in no time. Thanks to Jeff, his wife Kim and all of his employees for making this happen. We had a great time!

We are so thankful for everyone that has contacted us to support us, donate items for auctions and suggest fundraising ideas. Everyone’s ideas are great! Some of the things in the works are a cocktail dinner, Bunco tournament, Texas Hold-em, lemonade stands, yard sales, and Sadukee Spa ( in J-town) has offered to hold a benefit there as well. We also have our May 24th benefit coming up and may have another auction at Distinctive Home Accents. I will keep the website up-dated as more details arise.

Hailey and Carter both had a good day today. Carter had his last day of speech and occupational therapy and he will be starting school next week. He’ll be in the same class as Hailey, so that’s great. He can look after her! Hailey has gotten so much worse, since we originally started the website in February. She is just so tired all the time now. She sleeps 15 or more hours a day. She has regressed so much more within the last couple of months. She lays down almost all day, unless we are working with her. We feel so bad for her and we are so eager to get her the treatment. We hate this for her and we just want her to be better. We have to get Carter treatment before he gets to this stage. I just can’t bare the thought of him like Hailey.

Again, we love everyone’s fundraising ideas! Keep em comin! We’re up for anything that will raise money for them. Please call or email me if you have any thoughts. Of course, I will help in anyway and we’ll take the kids to all of them.

We fly to Texas tomorrow for the benefit there. Wish us luck! Michelle has worked so hard on this benefit and we know it will be great. I’ll let everyone know how it goes. Thank you all so much for all of your efforts and your donations! We are truly grateful. Please continue to keep us in your prayers. We know that is what has gotten us this far. Hope to see everyone soon at the benefits!