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Matthew’s is a more severe manifestation than most, a type that shows up in only about 1 out of every 10 OTC children, and almost always results in death within a few days of birth.
After spending the first 34 days of his life in the local children’s hospital, including three rounds of hemodialisys, 72 hours of prismadialisys, various blood transfusions, and dozens of medications, Matthew stabilized and was sent home to be with his mother, father and two sisters.
The only way to treat this condition in the long-term is with a liver transplant. Medications and special diet have Matthew in a state of relative stability, but it is not sustainable, and he is extremely susceptible to infections. As you can imagine, this is an expensive endeavor. For that reason, we are raising money to pay for uninsured medical expenses associated with transplantation.
Matthew’s family has chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. For more information, please contact HelpHOPELive at 800.642.8399.
Thanks for your support!
We are making slow but steady progress in Matthew's physical, occupational, and speech therapies. Here he's really enjoying this food, amazing considering his long history of oral aversion. https://www.facebook.com/HealingMatthew/videos/751408375024268/
Matthew has had a great new year so far! Thanks in large part to the generosity of the #Architalks bloggers!
Matthew's story was featured in The Scientific Parent: http://thescientificparent.org/organ-donation-a-bittersweet-and-generous-gift/
An update for the new year, looking behind and looking ahead: http://www.healingmatthew.com/2015/01/a-new-years-update/
Thank you following along with us!
We had ourselves a Thanksgiving miracle. Matthew is able to take all of his feeding by mouth! We still need is gastronomy tube for his around the clock medications, but this is a huge step for the young man who hasn't taken any significant amount of food by mouth since birth! http://www.healingmatthew.com/2014/12/thanksgiving/
GOOD NEWS UPDATE! We are pleased to let you know that Matthew was blessed with his Gift-of-Life, his liver transplant on August 25th. Thank you for your continued support and prayers. More to follow.
Last Friday we received our third transplant call, which again did not work out. We're still waiting, status 1B, and could get the call anytime. New blog post on the experience coming soon!
Some of the frustrations we face while waiting for 'the call.' http://www.healingmatthew.com/2014/08/frustration/
Matthew has been listed as Status 1B for over 10 months, and has continued to be remarkably stable! We've learned a lot about OPTN and UNOS since that time, and understand that there are just a few other kids listed under this status in our region. http://www.healingmatthew.com/2013/10/status-1b/
A week ago, we were the backup for a liver transplant, here's how that went: http://www.healingmatthew.com/2014/07/close-but-no-cigar-er-transplant/
Matthew has been on the waiting list for his liver for almost a year now. He's been remarkably stable, and working hard in physical, occupational, and speech therapies. Find out the latest at www.facebook.com/healingmatthew!
Matthew is now one year old! www.healingmatthew.com
Mom shared a new post about some great news moments that have happened in the last couple of weeks. Check it out here! http://www.healingmatthew.com/2014/01/happy-big-little-things/
Matthew is doing amazing, he's been miraculously stable, and is now seven months old. He is slowly making his way up the liver transplant list, and has been working hard in both physical and occupational therapy.
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Hello, just read about Matthew here http://www.lifeofanarchitect.com/new-year-new-adventures-that-might-kill-me/. Thanks to Mr. Borson for sharing. Matthew is gorgeous! And your battle worth fighting!! My very best wishes to you from Paris. You can tell Matthew he has friends here... See what he thinks about the Eiffel tower and tell him we'd love to take him to the top when he'll visit... With very best wishes,
Bruno
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Matthew Long
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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