The emails just keep getting better. This thread is between me and the dad of a girl who is doing GREAT after a successful BMT. You can follow her story at http://www.acureforhannah.com... (sorry for the poor grammar)
Thank you for your kind email and sharing with me about Bella!! We will keep her in our thoughts and prayers. I will check out her page and your blog. If there is anything we can do to help support your fund-raising efforts, please let me know. Our hope from day one was to share with everyone, no matter what the outcome. We know how it feels to be so desperate, to worry about hurting your child just hugging her. They truly our a gift from God and we cherish every moment we have with her. Please let me know if we can help you or your family in anyway.
August 24 at 11:04am
Hey you are most welcome! Say, do you know what the minimum age for eligibility is for the BMT trial? On the website it only mentions 25 or under. Did you go to MN to find out if Mason was a match, or can you do that locally?
Thanks for the info; we are planning on participating as well as soon as Bella is medically eligible.
August 24 at 11:08am
I am not sure what the minimum age is, but do know that a family with a child less than a year old is going through the process soon. You can have the match test done through you local pediatrician... it is just done from a blood draw. Check with Tim Krepski, and he can let you know what you need to get locally. 888-601-0787, if he is not there or doesn't return your call....keep calling.... squeaky wheel gets the grease.
This next thread is between me and my childhood friend I found on Facebook last night that I alluded to in last night's post...
Good to see you on Facebook. I saw that your daughter has EB. It happens that I work in Pediatrics in Minnesota and know that my colleagues have performed transplants for EB:
Her eligibility depends on her particular mutation, but I thought I should let you know.
August 24 at 10:40pm
WOW. Hey Logan! I was just on that very page this week! In fact, I was emailing back and forth with a EB dad who's daughter is around BMT day +130ish and doing great. He gave me the name of a Tim Krepski to contact to get the process started. Bella has Dystrophic EB. We are 99% sure it is recessive due to the complete absence of Collagen VII beneath the dermis. The original biopsy couldn't confirm the recessive diagnosis, so in the beginning of July, we did a blood test that got sent off to GeneRx to hopefully find out for sure.
Crazy, man. Do you know Dr. Wagner or this Krepski guy?
Thanks for reaching out. It's an even smaller world thanks to facebook and the internet, huh? How long you been in MN? Good place to practice medicine I imagine judging from The Mayo Clinic and U of MN.
We'll be heading your way at some point. Let's make sure to connect when we end up your way!
Today at 6:26am
Yes, it's a small world. The internet's definitely opened up possibilities for everyone, but especially the parents of children with rare disorders.
I do know John Wagner and all the pediatric transplant docs very well. They're all in the division of pediatric hematology/oncology and since I study childhood cancer we work closely together. I don't know Tim but he's a nurse rather than faculty, and so would be coordinating care rather than directing it.
It looks like the trial is for kids with collagen mutations rather than keratin mutations, so your daughter may qualify. If you do come it's a great team and (not that this is a primary concern) a great city to stay in. I've been here seven years, since graduating with my PhD (I'm not a physician). My wife and I have a boy and a girl, and we just this week moved into our second house.
Let me know if you come up here and I will help any way I can. If nothing else I can lend you a parka- those might not be so common in Orange County.
Watch as the Providential hand of God gently moves us through our lives, connecting and reconnecting. Who is He connecting you to?
Many blessings to all,
P.S. Don't forget...I am closing the Care Pages site on August 31. Please visit this blog only to continue to follow her story. Put the address above in your bookmarks/favorites. You can receive updates by creating a blogger/gmail account, become a follower and we will show up on your reading list each time log in. You can also check the options as you may be able to turn on an email option each time a post is made. When you become a follower to our blog, it Lets Ang and I know that you are still reaching out over the internet and walking this journey with us. YOUR PRESENCE through all of this has given us the strength to seem so strong. As the saying goes, YOU are the wind beneath our wings! (Can't believe I just went there - oh well...it's true!)