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Liam's Hope

jmorganff Message
29 May 2015, 09:18 AM

Liam was born 8/30/14. New York state, less then 1 year before began newborn blood screens for adrenoleukodystrophy. Before our sweet baby boy was 1 month old we had confirmed with vlcfa testing and genetic analysis that Liam did in fact have adrenoleukodystrophy. His 2nd MRI on 4/30/15 showed onset had begun. This I am farely certain is the earliest onset has ever been detected. We are now preparing to begin Liams chemo meds in 2 days and 3 days after that he will be admitted to the hospital to continue preparing him for a cord blood transplant. Now given the circumstances, this is probably the best case scenario for Liam. This gives him a chance for a good life. This gives him a chance for a future. We have medical insurance for Liam thru my employer. This will cover the bulk of our medical costs for the transplant. There are many costs not covered by my insurance, medical and otherwise. These costs I will worry about in the future once Liam can come home with us. This will likely be months from now. Possibly many months from now. Our home is about 200 miles from the transplant hospital. Roughly a four and a half hour drive one way. So this will add to the financial burden significantly. Food, lodging, gas and toll booth/parking fees will significantly impact my ability to keep up with an already tight budget. Liams mom had to leave her job about 2 years ago to care for Liams big sister. She was diagnosed with severe cerebral palsy due to a lack of oxygen at birth. Her disability is so severe she can barely even hold her head up. It affects her entire body and she still can only eat thru a feeding tube. All these and many more factors put our family at a great disadvantage financially. I work as much as possible, 15-16 hours a day 6 days a week. This leaves mom , with no help , to care for both children. Her burden is unimaginable already. Now consider the fact that she blames herself and believes she ruined both children's lives. The weight on her shoulders is astounding. Now add to that the fact that she feels our tough financial situation, even before all this happened with Liam, is also her fault because she had to leave her job. Mommy is without question killing herself in everyway. My sister and cousins convinced her to create a fund raiser to help raise funds to get us thru some of these financial hurdles over the next several months. Here is her fund raiser page Now I am the last person in the world to ask for help from anyone. My male pride exceeds that of most men and I am determined to stand on my own two feet even if it means both feet get cut off. Things have changed for me at an astounding pace in recent days and sitting here I realized I shouldn't stand by while mom fights for her family 24/7. Suffering silently and tormenting herself. Meanwhile I stand on my own two feet proud , Liam gets his second chance at a good full life, comes home from the hospital and finds that his father's pride left our family homeless. I'm terrified and feel helpless in all of this. All I can do is hope and pray for my sweet boys life, try and be there as much as possible, while working as many hours as I possibly can each week. Please share mom's fund raiser with your friends. Share it on Facebook and asked that everyone share it. If you are able maybe consider donating. Any assistance I can provide, consider it done. I was raised to help those in need and until the day I die will continue. Just this time I'm the one in need and I don't know how to do that.
deepask1 Message
3 Jun 2015, 02:19 AM

Hi We were able to help create this for you: Good Luck from RareShare & RareGenomics Team "Shooting for Liam": Deepa RareShare and RareGenomics
Loribeth82 Message
5 Jun 2015, 05:52 AM

My heart is breaking for you and your family. I saw a post about Liam on Facebook for the first time tonight, then happened to check in on rareshare, and saw the full story you posted here. (Deepa, the link you posted above is to a different boy's page, also named Liam...) I'll be keeping your entire family close in my thoughts, and in my heart. Our son was diagnosed earlier this year, at 2 years old. No symptoms so far, other than adrenal insufficiency, but this is all just completely terrifying. And I feel for your wife - there's no reason for her to feel guilty - but I'm struggling with those feelings myself. Thank you for sharing so openly. I love to know Liam has such strong parents!