Aylah was born on January 17, 2011 to myself, her mother Nicole, and father Carlton. She was the first child for both and was the best thing that ever happened to us. Aylah was a very healthy infant, and was discharged healthy. At one month old she began showing signs of unexpected seizures, and that was when our Journey began at All Children’s Hospital. We learned that Aylah had a diagnoses called Agenesis of the Corpus Callosum, also known as ACC of the Brain. This condition happens when the left and right hemisphere of the brain do not communicate with each other. There is no known cause, and this disorder can be mild to severe. Aylah falls in the middle of the spectrum. Meaning she could have very little side effects, or very severe. Epilepsy was a definite and we had to be sure to get her seizures under control right away.
Although we were devastated to hear this news, we knew everything would be okay. At 5 months old Neuro surgery operated on her nasal cavity due to a mass they found during an MRI. They went in through her skull and removed this. As she got older we noticed she was not meeting her milestones. We immediately began physical, occupational and speech therapy at around 6 months old. Aylah was doing well with everything, but her seizures were not under control after trying almost every medication possible, including everyday injections in her thigh. Aylah began attending a medical daycare due to having so many seizures in a regular preschool setting. She received all of her therapies at school and did well. At two years old, Aylah still could not sit up on her own, feed herself, or say any words. She was able to cry when sad or hungry, and laugh when happy.
When Aylah turned three the Neurologist wanted to preform a very rare surgery where they would disconnect the left hemisphere of her brain from the right hemisphere, since the left side was “dead” and causing all of her seizures. At 5 years old we finally gave them the okay after months of going back and forth with pros and cons. The pros were no more seizures, and she would possibly develop at a faster rate, the cons were death: (It was a very very tough decision, but we did what was best. the surgery was the longest 12 hours of our lives). She did well. That night in the recovery room Aylah had a seizure. We were devastated. It was pretty much letting us know the surgery was not a success. From that day on we have continued with any and all services possible.
Aylah is now 10 years old and going into 5th grade at her school. She is doing so well and is a very happy girl. She receives intensive therapy and progresses more and more each day. Aylah loves music and instruments and her favorite singer is Ed Sheeran. She loves car rides, water, and being outdoors. Unfortunately, Aylah is getting bigger each day, and currently still not able to sit up on her own, or walk. She uses a lift at home, a wheelchair, a special bath tub, a stander, and a special chair to sit in. Her insurance will not cover a vehicle that has been made accessible for her wheelchair, and this would cost us thousands to have done on our own. We currently have a car that cannot take her wheelchair from place to place, so we use a stroller to go places, that is not comfortable for her. The lifting her in and out of the car has taken a toll on all of our bodies. She is 90 lbs and not able to assist in lifting her at all. Due to this, Aylah is limited to being able to attend events, her brother’s sports activities, parties, etc. Anything that is an all day event takes a toll on her when she is not able to have her wheelchair. Her stroller is convenient for small outings, but very uncomfortable for her due to little trunk support. We have tried to get a folding wheelchair instead. Due to how much support she needs, a folding wheelchair is not possible.
Help Hope Live reached out to us to let us know there are options available and It has truly been a blessing to be able to have this opportunity. Myself, Aylah, and my entire family are grateful for everyone that took the time to read a little about her life and assist her in any way.
God Bless.
Family and friends are raising money for the nonprofit Help Hope Live in honor of Aylah McDuffy to fund uninsured medical expenses associated with Catastrophic Illness.
We have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share Aylah’s page on your social medica.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
