If you need to contact us for any reason, whether it be for fund raising ideas or to express your support, we would love to hear from you.
Our Home # is 502-921-9105
Miranda’s cell # is: 502-428-1763
Miranda’s email address is: mirandag1981@yahoo.com
Neil’s email address is: jtng1979@yahoo.com
I heard about your story on the news and in the paper.
your childrens story has touched our hearts and we would love to help any way we can. your children are in our prayers and wish you the best. I can’t imagine haveing this happen, I have two children of my own, my daughter is 5 and my son is 2. i can’t imagine life without them. stay strong for your children and know that god works in misterious ways. he hears us but is just waiting for the right moment to help.
Im not sure if you got my email address, but I sent the comment about a fundraiser at the University of North Florida in Jacksonville. If you need to contact me my email is t_baker91@yahoo.com.
Love in Christ,
Tiffany Baker and the Baker family
I heard about your story. You and your family are in my prayers. Today 5/28/2008 was field day at school and they spoke about your family. My son goes to the same school, but he’s in second grade. Your story has really touched my heart, so I contacted the Oprah show about the “BIG GIVE” and forward your story on. Just wanted you to let you know if they contact you.
You can email me at dawn.druin@insightbb.com
Dawn & Family
Hello
I have heard about Haileys story on CTV this afternoon and your story is some what close to my god daughter who passed away at the age of three years on June 5th, 2008 with Sandhoff disease. Sandhoff is a genic disorder as well. Your story has touched my heart as it has really has brought back memories as we fought as hard as we could for a cure as well for lilianna. Please go see the website and the links see for yourself that they are alike. My prayer and thoughts are with you and you children.
Jenn and family
please feel free to contact me by email jenniferling84@hotmail.com
Our thought and prayers go out to your family .
Just wanted you to know that we send you lots of love, and hugs your way. We here at Journey continue to lift you and your family up. There is a revival going on in Lakeland Fl a couple of people have gone and seen God do miraclous things so we are submitting Haileys and Carters name for more prayer. We know God will give you what you and your family need in this time of trail. I am not promoting the revival just the miracles that Jesus has done already, but if you want to see for yourself it is http://www.freshfire.ca and is on God TV if you have that channel
Psalms 139 13-16 says this:
13- You made my whole being; you formed me in my mother’s body.
14- I praise you because you made me in an amazing and wonderful way. What you have done is wonderful. I know this very well.
15- You saw my bones being formed as I took shape in my mother’s body. When I was put together there,
16- you saw my body as it was formed. All the days planned for me were written in your book before I was one day old.
Take comfort in knowing God is in control even when your whole world is turning upside down.
God Bless you all
Gloria Andino
Miranda –
I and a mother of two and live in BC… I can tell you that the outrage here is over the top after hearing your family’s story on the news… I am so sorry for the way you were treated here in BC, maybe not surprised, but it’s disgraceful nevertheless. As far as most of us are concerned, the airlines in question are BEGGING to get sued. Stay strong and don’t give up; your family has support here in Canada too – we’re praying for miracles and solutions!
Caroline
Hope this helps, sometimes corprate jets do free flights for sick kids you just have to contact them. I saw this in a magazine while waiting at Million air At YVR
Syd
Hi, i just read today 6/30/08 about your children and the airlines refusing to fly your daughter on to China for stem cell treatments. Have you tried requesting the help of CAN (CORPORATE ANGEL NETWOR) PHONE 914 328 4226 or 1 800 328 4226
I will keep you, your family including Hailey and Carter in my prayers and God will make a way to help your children and in this awful disease of Late Infantil Batten Disease.
Take her to Lakeland Florida. God’s glory has been out there since April 2, 2008 in a major outpouring. Thousands of healings have been taking place and they are documented. 27 people have been raised from the dead. This is an awesome move of God. His love and compassion are great toward his creation and your children will be healed if you take them to Lakeland. My pastor has been out there for 2 weeks and he says it is real. He saw 24 people come out of wheel chairs in one night. May God bless you. May His mercy and compassion be poured out on your family.
As a Canadian I am ashamed of the way you were treated by Air Canada and by the physician who made that insulting comment about your country’s healthcare. Who are we to criticize when we have serious issues with our own healthcare system?
We are supposed to be known as a compassionate country..but more and more it seems that is less the case.
The real issue though is your family. Our thoughts and prayers are with you. You indeed have lots of supporters this side of the border. God bless.
Paul
Dear Goranflos’,
I hope what I sent helps to offset the additional costs and time wasted by this airlines awful and unthinkable treatment of you. My thoughts and prayers are with you. Hailey and Carter are precious and I pray that these treatments work.
God Bless You all,
Pat Nies
We are praying for you! Your story breaks our hearts. But God is good and I hope you will be in China very soon, getting the treatement for your precious little children.
i just want to tak the time to cheer you on and hang in there,the story started out and just envelops you before you realize it.what an inspiration your family is
I heard your family’s story on the news recently. Please know that we’re thinking of Hailey and Carter here in Milwaukee, WI.
XOXO
Hugs and Kisses for the little ones. They can’t ever have enough of those!
Hi Miranda,
I just want you to know you and your family are in my prayers. I have a daughter who is 11 years old and has never spoken and is developmentally delayed. She started having seizures when she was 3 years old also. Up until 2 years ago we had no diagnosis. We received our diagnosis two years ago and when we did my daughter was the 31st person in the world to be diagnosed with this disorder and the only one in the US. As of now there are 3 others and one in Canada. So I understand where your living life right now. Thankfully God has put awesome doctors in our life and the seizures have stopped. But I want to tell you that even though it seem hopeless it isn’t. I too have been watching the Lakeland Outpouring on TV. And it’s incredible what God is doing. SO I just want to encourage you to not lose heart. There are people praying for your family and God is just taking you all on a journey. Sometimes it’s really difficult. But you’ll make it because it’s about your kids.
Have just made a donation to your precious children’s account. My 5 year old great niece Tatyanna Zazalak also has Batten’s and they have just returned from Beijing where she received stem cell treatments.Your story has touched me very deeply and I pray you and Hailey make it safely to China.
Liz
Please contact Corporate Angel Network they may be able to help you. Here is their website with all contact information. http://www.corpangelnetwork.org/
I am employed in Corporate Aviation, there are a couple that come to mind that may also be willing to help. NetJets in Columbus Ohio area. This company is owned by Warren Buffet, here is their contact information 877-356-5823.
Also there is Flight Options which is in Cleveland Ohio, CEO is Michael Scheringa or ask for Megan Wolfe ( I know her she may be able to do something) 877-703-2348.
Good luck and my prayers are with your family.
Your precious babies are in my prayers DAILY! As a mother, I cannot imagine what you must be going through watching your babies with this illness but God is good and in control. I pray your daughter will get the treatment she needs and know that so many of us out here really do care and want to help.
I am RN of 23 years . . . mostly critical care (especially neurosurgical patients) & pediatrics. I can volunteer as a flight RN.
God Speed,
Marlaine
I am so moved and reading about your beautiful children just brought tears to my eyes. I cannot ever imagine the pain you are going through. I have a 5 year old little boy with Autism, and that to me was devastating. I will pray for your little angels that they receive the treatments, and that they will be a success.
God Bless
Julie
I just sent a small donation. I knew I would not be able to sleep tonight if I didn’t do something. Your family is in my prayers, over and over. Please hug and kiss your precious, beautiful children, and know that many people are holding their plight close to our hearts.
Hello. I saw your story on tv a couple nights ago. I was so touched and so happy to hear that you will be able to go to China to have this procedure done. It’s too bad you cannot have it performed here, but it is what it is I guess. I will keep all of you in my prayers over the coming months. Hope you have a safe and successful trip!
Our prayers are with you in your journey to China & your stay there. Just watched your story on Fox 2 Detroit. I am so happy that you have made it to China & we will pray that the stem cells work for Hailey.
Hi Miranda-
Our heart goes out to you, your husband and your children as we too know what it’s like to have a child with LINCL. Our son had gone to China for SCT (Stem Cell Treatment) in Nov 2006 and had embryonic stem cells injected directly into his brain…much like the Oregon Trial. Our doctor in Beijing has treated 9 Batten kids with some of them already having gone for 2nd and 4th treatments. We were set to go for our 2nd treatment when sadly our son developed Elipticus Status…unrelated to the SCT. He lived to 10+ quality years…longer than most with Batten’s disease. We only wish we knew about the the SCT in China a few years sooner. We also tried to get into two different US trials to no avail and thus were forced to look elsewhere in the world. We believe in stem cells being the future cure of many diseases…it will be the penicyllian of our generation. We investigated many different types of SCT and procedures and hospitals until we settled on the doctor we believed to be the best choice. It is a very difficult decision to put your child thru something like this, and if you don’t, you know the disease will take them from you despite your efforts or lack of them. If you would like to know of our experience with SCT and what it had done for our son…please feel free to contact us.
Stay strong,
Jenny Carter
Hamilton, Ontario, Canada.
Your family is definitely in our prayers. I have been following the story on WAVE3 for some time now. I had no clue about the Shep fundraiser, or we’d have been there to help out. Maybe a community yardsale would help raise funds? We’d be willing to donate to the cause. That would encourage those who cannot donate cash to feel like they’ve contributed. Please update us with any more fundraisers. We’d love to either attend or volunteer. I can also help to get the word out.
Thanks, Cris
hI , Miranda
how are you all doing in China ?
My Miranda , i will be going to China for the umbilical cord stem cell treatments , bone marrow .
we will be leaveing Kentucky Oct 3rd , our last day in china will be Nov 8th .
we re so ecited , nervous .
i look forward to hearing from you , praying that every stem cell that goes into thier little bodies ( GOD uses ) .
i know you are so busy , but when you can i would love to hear from you .
GOD bless
Melissa >Blessed mom
Saw you on the news in Cincinnati. Never think for a minute you are doing the wrong thing. Your family is very brave and I commend your courage to seek out a treatment and pursue it. Good luck!
Your children are beautiful and in my prayers daily. What special and strong parents you are. I am inviting fifty ppl to your fundraiser and emailing everyone I know. God Bless and see you Saturday.
nikole
Miranda, my thoughts and prayers continue to be with you and your family. It was wonderful to communicate with you by email. I was so happy to see you and Hailey on the webcam but was sad to hear about issues with the IV. My Zoey is a hard stick as well. They have used a special light to help locate vein and for some reason they have success with the foot but swelling has occurred… it is very painful in addition to the IV process itself. I truly hope Hailey feels better soon and you are able to see the results quickly. I want to send a small pink cuddle bunny with blankie to Hailey. It was on backorder but I could order online and have it shipped directly to you. It is a very small gift but my Zoey loves hers as it traveled with her during each hospital stay, etc.. I want Hailey to have it when she comes home from China so please email me as soon as you have a chance. We will be on our way to Duke University for Zoey’s stem cells to potentially treat her Cerebral Palsy, just waiting on HLA results from her blood work to match up with cord blood sample and then we should be all set for Tuesday, 7/29! I will do my best to check in daily so that I may be kept up to date. I’ve shared Hailey’s story with some of my co-workers and our charity fund meeting is this week. I hope we can send donation soon. Hugs and kisses to you and Hailey as well as Carter back home with Dad!! We’d love to share more pictures. Be well, and smile. God bless you all. With love, Mel (Melanie Komninos, New Milford, NJ)
hey there! it sounds like such good news for Hailey and that you are seeing positive results. I would love to know what the OT’s are doing? I wrote Bill Smith to let him know what was happening and he said he’d been keeping up with Hailey’s development.
love ya and big hugs to Hailey!!
tobey
Hi Miranda and Neil,
I am SOOOO glad that Hailey’s treatment is going well!! I was heartbroken to hear on the news when they turned you away from your flight the first time. It sounds like she is doing much better!
You and the kids are in my thoughts quite often as I know you are going through some difficult times. Just remember to stay strong and keep smiling. Look at what you have accomplished so far???
I hope you have a safe return home, and I look forward to seeing the updated pictures.
I’m just a phone call away if you need anything at all.
Lori
hey i juz wantted to say iam sorry about whats been going on with your kids, the diease. but juz to let you know iam selling as many tickets for you as i can. and iam also puttin my lil gurl in the baby contest! hope to see you all there if its possible
hey miranda,
Hailey looks just great. her eyes seems so much clearer. that is just wonderful. i also love your cute outfit. the people all around you guys look very loving and caring. take good care. you are missed, but i am so very, very glad that this is going so well. take care again.
melinda
Miranda and Neil.
I am so sorry to hear about your children. both are very beautiful. i just had a baby last year and i could not imagine life without her.. we went to the cutest kid contest to enter to help you all a little and i got to see carter. WOW! he is such an amazing little kid.. i hope everything goes well and i will do everything i can to help!
hey girls, I just got a chance to read the latest! Glad all is going well. It is amazing the numbers involved in her TX and you are so positive about the experience!!! Did you get to see any of the opening ceremonies?
Hugs to hailey. We have been on break for two weeks and will be back on Monday! It has gone by fast….
Miss you!
love tobey
Hi, I am Stacey’s mom. We both are keeping everyone at the BC Health Dept. up to date on the goings on with you and your family. I personally check your website every day. We spent a lot of time in the hospital when Paige was having her seizures and I know the feeling of being so helpless as to what to do for your own child. I have helped Stacey with the fundraisers and just hope it will help as well as getting the word out to people and asking for lots and lots of prayers. I am really amazed at the pictures and videos of Hailey and the improvement she seems to have made. I just wish you could have taken someone with you so you wouldn’t be so alone. I’ve read about the other families you have met and I know that has had to ease it some. Good luck to you all and the rest of this journey. Please keep the website updated and let Stacey know if we can do something to help.
i’d just like to say that i’m so very sorry about your children’s condition. and that i’ll be keeping you in my prayers.
Miranda and Neil,
I am so touched by your story. I am 13 years old and the second I turn 14 I am going to volunteer at the local hospital in the children’s ward in honor of your children. I want you to know that I am praying for you, Hailey and Carter. You all are so brave.
Kelly
My thoughts and prayers go out to your family. God Bless your family.
Bijaya
Hi
My name is Jenna and I came across your website. Hailey and Carter, are adorebale, and both an inspiration, and miracles. They may be young but they are both hero’s and they will be in my thoughts and prayers.
Your site is very informative. You see I was born with a rare life threatening bone disease, and I have heard about stem cell transplant/treatment, but my parents and I weren’t sure if it would help me or not, plus right now I am dealing with other health isues, like a broken jaw, and we may have to go to the States, Dallas Texas. I am from BC. Canada.
I wish you the best of luck in your journey.
Sincerly,
Jenna
I seen your letter on the Jon and Kate Plus 8 website. I tried to click on the link and it wouldn’t work. I thought I’d let you know b/c I’m not sure how many people will then try and look for the site elsewhere. My thoughts nad parayers are with your family.
Hello, I do not know you, but I just wanted to let you know that I think you are an amazing family. I cannot even begin to think what life must be like for you on a daily basis and how difficult it must be to watch your children in situations they are in. It must be heartbreaking for you, and I just think that your very brave and extremely strong to be able to get out of bed every morning. I have 4 year old twins, a 2 year old and 11 month old, and I cannot even imagine being in your shoes. One of my 4 year olds had childhood leaukemia and is currently in remission, so in some ways I understand your battle from the perspective of the worry and fear for your child. I beleive we have to take what life gives us and rise above it and try our best to fight everyday for what we want and beleive in. The Lord is amazing and he does work in mysterious ways. I just wanted to let you know that your family are in my thoughts and prayers, and I plan to spread the word about your family, and hopefully all the prayers will start to help a little bit more and bring you some respite. I pray that 2009 will bring you strength to continue to support your children in this battle against a horrible disease.
HELLO MY NAME IS CAITLIN IM 10 YRS OLD AND I HAVE BATTENS DISESE TOO MANY PEOPLE HAVE MADE DONATIONS BOTH ME AND MY CUSIN HAVE IT SO WE ARE FIGHTING IT WITH HAILEY AND CARTER
I cannot imagine how you do it. May God continue to strengthen you and your family to continue fighting.
I will pray for your family and those beautiful children of yours.
I will try to keep sending you what I can.
Dear Miranda,
We have EMailed many times before. I am having a lemonade stand in a few months. I will have 2 money boxes out on the table. One will be for lemonade money, and the other box will be for you. I will be bringing my computer with your website on it, and if we get a donation, I will somehow get it to you. I PROMISE
Sincerely,
Katie
Hello, my name is Jess, and I am fourteen years old. I heard about your story and I am touched. Hailey and Carter are so cute and I wish them the absolute best! I will definitely make an effort to donate! I am praying for their wellness everyday!
I’m really touched about this story and I’ll try to do whatever I can. “God bless you all and utterly satisfy your heart with God”. Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all.
I heard about Hailey and Carter when i was on the Jon and Kate Plus 8 website, and i was touched by your story. I am definately going to try and donate. If there is anyway I can help at all, please contact me. I also just joined your group on facebook. You’ll be in my prayers!!!
-Meg
hey miranda its good to know that hailey is doing a whole lot better and carter didnt have it as bad right but anyways ive emailed you before me and my friend but now its me and my sister. Hailey used to go to North Bulitt Christian Preschool and my mom used to work there until 4 weeks ago because she got a new job and ,y momo said she still remembers you. Anyways i hope hailey and carters batten disease goes away can it go away is what the question is or will it go away soon. I wish u lived close so we could talk more than just on here but o well what state do u live in. Tell Hailey and carter that somebody prays for them every night before bed and before every meal and all the time at church and everywhere well ill let u go have a great time and i hope hailey and carter get better they are so cute and also ADORABLE same thing but oh well.
Talk to you later I am going to pray for them right after i get done on here emailing u well talk to u later bye.