Amanda is the most amazing mother. She gets her strength from the best their is, our mom. Sadly, just as my mother had to summon the courage and strength to take care of a very sick baby on top of her other children, Amanda now has to do the same.
Baby Zachary was born March 23, 2018 at 1:48pm. Despite being 6 weeks early, he came into the world a whopping 7lbs 8oz. Unfortunately most of the weight was due to his having an extremely rare genetic disorder, Eagle-Barrett Syndrome, more commonly referred to as Prune's Belly. Baby's born with this disorder have:
Chronic Kidney disease
Potential need for dialysis and kidney transplant
No abdominal muscles leading to several reconstructive surgeries
Developmental delays due to lack of abdominal muscles
Malformed urinary tract
Breathing problems due to the pressure the belly causes the diaphragm
Zachary suffers from this disease to the full extent. He will be in the NICU at Lurie's Children's Hospital in Chicago, IL for an indefinite amount of time. Currently they are working on getting him stronger before they can come up with a plan of action. The first reconstructive surgeries will be for his urinary tract as it appears that his urethra either didn't form or is blocked. Eventually (not until he is AT LEAST one year old) they will graph muscle into his belly. He has a very rough road ahead of him with a lot of hospital stays.
All babies need love and human contact, but sick babies need even more to grow as healthy and strong as possible. Amanda knows this, but has to also be there for her 2 year old who doesn't quite understand not only where mommy is, but where his 'baby brudder' is. With daddy being away in the Navy doing the best he can to support his little family, Amanda is faced with the balancing act on her own with as much family support as we can provide, but sadly the cost of driving to and from Chicago (2 hours each way), the tolls and the parking alone have already drained them. Despite insurance, there are still unpaid medical bills adding up and more are going to pour in.
While there is no shortage of love, Amanda and her little family could use any financial help you are able to give. Of course there could never be too much love and prayers either.
On behalf of my sister and baby Z,
Thank you so much.
- Jeremy Barrington
- Shahnnon Maureen Hawkins
- Maggie Martin
- Teja Huntley
Organizer and beneficiary
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