Ahmari’s NICU stay & genetic disorder battle

My sister Desiray Washington and her partner Ahmad Burney were expecting to welcome a little girl in February 2024. Due to an emergency Ahmari Rashel Washington Burney was born 8 weeks early in Rochester, NY (2 hours away from their home). Immediately after Ahmari was born she started showing signs of hypotonia (low muscle tone) and she needed oxygen support like most premature babies do. In the first 48 hours Ahmari had a host of tests, a central line, several EEGs, X-rays, a lumbar puncture, eye exams, and a wide range of medications given to her because she was what they called “very sleepy.” For the first week of Ahmari’s life she was poked and prodded multiple times a day to no avail which prompted her nicu team to turn to genetic testing as she still is not moving very much, has low muscle tone, has eye muscle weakness and is overall still “very sleepy” despite being on caffeine and receiving many different therapies daily.

After what felt like forever, the results have finally come back and Ahmari has a rare genetic mutation in her CNNM2 gene. This mutation can cause seizures, developmental delays, and learning difficulties as she continues to grow. While we are hopeful that this will not have lasting impacts, we won’t know until we know. We do know she is requiring specialized care for the foreseeable future.

In the meantime, life has been very scary and very touch and go for both baby and for her mom as Desiray has dealt with health complications herself leading to several re-hospitalizations and 2 additional surgeries since giving birth in December.

Desiray was out of work and on bed rest since even before Ahmari was born and as you can imagine Ahmari’s NICU stay has come as a big bump in the road. She will be in the NICU for at least another month. Desiray and Ahmad have 3 children at home and are trying to make ends meet. Desiray has been staying in Rochester at the Ronald McDonald House and travels to the hospital daily and Ahmad travels back and forth to see them both.

As you can imagine, this has been a heavy time for their entire family and on behalf of them and their children, we have created this gofundme to relieve some of the stress they are facing and will continue to face with Ahmari’s diagnosis.