Support Assata's Fight Against HLH

Hi everyone, my name is Dee Hambrick and first I want to thank you for reading my daughter's story.

Assata is four months old, but she's already conquered more than most people will ever have to. She was born with a cleft lip and palate, but she didn't let that slow her down for a second. Her plastic surgeon said he'd never seen a baby with a cleft palate breastfeed before Assata. She's been beating the odds since birth!

Unfortunately, Assata is rare in a different way. She is one of the few babies (1 in 50,000!) every year who are born with familial hemophagocytic lymphohistiocytosis (HLH).

On April 24, Assata had a high fever. Her mom and I took her to the ER, where they ran tests, but ultimately decided that she had a viral infection that would pass. Even though the doctors weren't concerned, her mom and I knew something was seriously wrong. We went back to the hospital 3 times over the next 4 days. On April 29th, the doctors repeated the tests from the 24th, but this time the results showed that she was dangerously sick. They immediately sent us to Cincinnati Children's to see the liver specialists there.

In Cincinnati the doctors quickly diagnosed her with acute liver failure and sepsis, but they didn't know what was causing her life-threatening sickness. She was in the pediatric intensive care unit for the scariest two weeks of my life, and even went into cardiac arrest at one point because her body was taking on too much fluid from all the blood transfusions the doctors had to give her. After spending four days on dialysis, she started to get better, and by that point the doctors had diagnosed her with HLH.

HLH is an autoimmune disease caused by a genetic mutation. Assata's mom and I both carry the gene, and we had a 25% chance of having a baby with HLH. I already mentioned that Assata loves to beat the odds!

When a baby with HLH gets sick, their immune system doesn't know when to stop responding. Their cells start to attack their own body, resulting in multisystem organ failure. Without treatment, most babies with primary HLH die before their first birthday.

The cure for HLH is a bone marrow transplant, which we are preparing for now. We are so lucky to be getting treatment at the best hospital in the world for kids with HLH. We've been staying at the Ronald McDonald House in Cincinnati since April, and the doctors expect us to be here until at least November. Even after the transplant, Assata's immune system will be weakened for a year, and we will have to be very careful with her health.

Thank you for reading this far, and for considering donating to help our baby. Any donations will go toward our medical bills, added food and travel expenses, and certain home improvements needed to make our house safe for Assata in her immunocompromised condition.

Please also consider joining the bone marrow registry!! It only takes a cheek swab and you can save someone's life! bethematch.org has all the info needed to join. We are so blessed that Assata had multiple matches, and we never want anyone to be in our position but unable to find a match to save their child.