UPDATE 10/16/08

Hello all! I first wanted to thank everyone for following our story and expressing your support to our family. We have hundreds of visitors on our site daily and it really touches our heart, knowing that so many people are interested in our cause and care about Hailey and Carter so much. We get tons of people writing in with the most encouraging and inspirational messages. We love reading them all and have actually made several friends through this. Your support and prayers and greatly appreciated!

We recently had a few fundraisers, 4 over the past few weeks. All of these events were organized by other incredible, caring people. We know first hand how much work these benefits entail and we are forever grateful for those who took their own time to do this for our family. The combined total for all 4 fundraisers was over $10,000! WOW! Great job everyone. We have now raised a grand total of over $124,000, in a matter of about 7 months.

Hailey has been doing very well lately. As I mentioned before, she was having some break-through seizures. We’re not sure why, but I emailed the doctors in China and they had me go up on a couple of her seizure meds. She was not anywhere near as bad as before we left for China, but we were still a little concerned. The doctors in China were quick to respond and since we have increased her meds, she is back to doing much better.

We did get some bad news on Carter’s treatment plan. As I’ve mentioned before, I have tried contacting the doctor in N.Y., that heads up the clinical trial, numerous times and he has yet to call me back. However, another Battens father did get a chance to speak with him last week. I was very disappointed to hear that the date for the trial to start has been pushed back, yet again. Every time I or another parent speaks with him, the date gets pushed back further and further. Now he is saying that they may not even get the funding until next June and the trial would start several months after that. We are all incredibly frustrated. Of course, the only thing holding the trial up is government funding. The doctor has told us several times that if we can all pool together and raise 3 1/2 million dollars, he will treat 4 children… impossible. We are so proud of ourselves for the amount we have raised thus far, there is no way 4 families can raise that kind of money. By then, they would already have the government funding. Of course, we pray that something miraculous happens and the trial will start much sooner. Our children simply do not have that kind of time to wait, especially when all that’s holding up this life saving treatment is money.

We are now more torn than ever, as to what to do about Carter’s treatment. He is still doing very good. He is still walking and talking (though is severely delayed) and his seizures are under control… for now. He has not started to regress yet, but it is inevitable and we don’t know when that day will come. I think that we are going to try to wait as long as we can for the trial, but once he starts to regress, he is off to China. We now have enough money raised for Hailey’s second trip in January and a lot of the money raised for Carter’s trip. We would like to have all of the money needed for Carter’s trip in place, in case we decide that he cannot wait for the trial and needs to go ahead and go to China for treatment. If he does get accepted to the trial, that money will go to Hailey’s third trip to China next summer.

On a happier note, the kids recently had both of their wishes granted through Make A Wish. Make A Wish is a charity that grants wishes to children with life threatening illnesses. We wished for Carter to have a new swing set. He got it a couple of months ago and loves it! It even has a special swing for Hailey. We wished for Hailey to have a new hot tub. We got that a couple of weeks ago and we ALL love that. She has always loved the water and she is so relaxed when she’s in it and usually goes to sleep. Aside from the 1-2 hours of physical and occupational therapy I do with her daily, she lays around a lot and that has to leave her pretty sore. I know the hot tub feels really good to her, she seems to really enjoy it.  It’s also great physical therapy for Carter. Mommy and Daddy love it too! Make A Wish is such a great charity. They have been so good to our family and it is a wonderful organization. Thank you to everyone at Make A Wish!

We are continuing to work very hard and are putting forth every ounce of effort to raise this money for our babies. Hopefully we will have more fundraisers to come very soon. Any new ideas are always welcome. We are very devoted to Hailey and Carter and will do whatever it takes to get them better. Word of mouth has been a big part in raising money for the kids, so your help is greatly needed and appreciated. Thank you all and God Bless!