The A Squad
Donation protected
At the beginning of her third trimester, my friend Brittany learned that her baby had dwarfism. Weekly ultrasounds and an amniocentesis later, Brittany and her husband, Steve, had no real answers, so they and their medical team concluded as best they could that Baby A had achondroplasia, the most common kind of dwarfism.
Nope.
When Baby A was born in December 2018, she spent a week in NICU, then she spent a week at home. There was the usual crying and breastfeeding and crying about the breastfeeding; no one got enough sleep, but everyone felt loved.
Then, due to a series of fortunes that were a combination of
--human judgment (Brittany's, at which she excels)
--medical skill (their team)
--legislation (Louisiana: last state in the union to adopt it, 11 days before Baby A was born, guaranteeing the blood work that would catch the disorder)
--and divine intervention;
it was determined that Baby A has cartilage-hair hypoplasia (CHH), an extremely rare genetic disorder that sometimes manifests with a severe combined immunodeficiency disorder (SCID), commonly known as "bubble boy disease." Baby A's body makes very few white blood cells. Things that you or I would literally sneeze at might kill her.
Baby A spent a week in January 2019 in the cancer ward at Children's Hospital and was only allowed to go home because Brittany and her husband have no other children (tiny vectors of germs), pets, or house plants.
The only "cure" is a bone marrow transplant, which should allow her body to build an immune system. That happens on April 30, 2019.
In order for the transplant to be as successful as possible, Baby A started chemo on April 23, 2019.
Baby A and her parents will be inpatient at Children's for at least one month, possibly for two months. Your donation will go towards Baby A's hospital bills and childcare expenses (she requires special handling that insurance doesn't cover) and towards Baby A's family's meals, transportation, etc. while she is inpatient. All remaining funds will be donated to CHH research.
Baby A is a little person. Let's make sure she can have a big world.
Nope.
When Baby A was born in December 2018, she spent a week in NICU, then she spent a week at home. There was the usual crying and breastfeeding and crying about the breastfeeding; no one got enough sleep, but everyone felt loved.
Then, due to a series of fortunes that were a combination of
--human judgment (Brittany's, at which she excels)
--medical skill (their team)
--legislation (Louisiana: last state in the union to adopt it, 11 days before Baby A was born, guaranteeing the blood work that would catch the disorder)
--and divine intervention;
it was determined that Baby A has cartilage-hair hypoplasia (CHH), an extremely rare genetic disorder that sometimes manifests with a severe combined immunodeficiency disorder (SCID), commonly known as "bubble boy disease." Baby A's body makes very few white blood cells. Things that you or I would literally sneeze at might kill her.
Baby A spent a week in January 2019 in the cancer ward at Children's Hospital and was only allowed to go home because Brittany and her husband have no other children (tiny vectors of germs), pets, or house plants.
The only "cure" is a bone marrow transplant, which should allow her body to build an immune system. That happens on April 30, 2019.
In order for the transplant to be as successful as possible, Baby A started chemo on April 23, 2019.
Baby A and her parents will be inpatient at Children's for at least one month, possibly for two months. Your donation will go towards Baby A's hospital bills and childcare expenses (she requires special handling that insurance doesn't cover) and towards Baby A's family's meals, transportation, etc. while she is inpatient. All remaining funds will be donated to CHH research.
Baby A is a little person. Let's make sure she can have a big world.
Organizer and beneficiary
Emmy Murray
Organizer
New Orleans, LA
Brittany McGovern
Beneficiary