I am hoping that all my Facebook friends will find it in their hearts to help this family.

Macy is a friend and colleague, an RN who just had a sweet baby boy. He has been very ill. I am hoping to raise as much money as we can to help with his medical expenses. Abram has been hospitalized several times and currently is at a children’s hospital. 

PLEASE HELP❤️ 
••ABRAM UPDATE••

Many of you have been asking for updates about Abram and we finally have enough answers to be able to provide a good update for you all.

Abram has been having trouble with breakthrough seizures for a few weeks now. After some medication adjustments these, as well as his abnormal muscle movements, seemed to improve. We were excited to see the improvement, and sad to say that it did not last long. Abram began to cluster abnormal muscle movements and seizures frequently and was requiring rescue medications at home, in addition to his daily medications, every 6-8 hours. His clusters began to last up to 15 minutes in duration. On Saturday night he had a severe cluster that caused him to stop breathing. We called 911 while I administered rescue breaths to our baby boy. He came out of the seizure and started breathing. His vitals were stable again and we took him to Southeast ER where he was having trouble regulating his body temperature and his blood sugar. From there he was flown to Cardinal Glennon in STL. The next day he had three more intense clusters that required him to have rescue breaths with an ambu bag, because of this we were moved from the regular floor to the PICU.

Abram had genetic testing done while in the NICU during our first hospital stay in October. From that we learned that he has a type of genetic mutation called GNAO1. During our current admission at Cardinal Glennon the Neurologist finally felt confident in saying that GNAO1 was the reason for all of Abrams health problems. GNAO1 is a rare disease that was first discovered in 2013. There are only approximately 200 people known to have this disease at this time. GNAO1 does not have a clear clinical picture and affects all patients with different symptoms at different levels of severity. There is a clinic held once a year with a handful of these patients to help collect data about this disorder. This clinic is held here in STL! Dr. Amy Viehover is a movement disorder specialist that has treated multiple patients with this disease and she works at St. Louis Children’s Hospital. We were desperate to talk with her. Our previous neurologist had never even heard of Abrams condition. Thankfully, we were able to be transferred to STL children’s PICU on Sunday, and today we were able to sit and talk with Dr. Viehover as well as another neurologist who specializes in treating children with GNAO1. Abram is the youngest patient they have ever seen exhibit symptoms of GNAO1 and they are excited to be able to follow him. We will be becoming part of the GNAO1 clinical research family in hopes to help more families in the future.

We want to thank everyone for their continued support and prayers as well as the for the monetary donations we have received. We appreciate each and every one of you! We feel all of the love you’re sending our way.

As if God hadn’t blessed us enough and put us in the right place many times during this, he made us chuckle yesterday when we found out he brought Abram into this world on GNAO1 awareness day.

ANY AMOUNT WILL HELP!