Help Alijah find his 10 fingers and 10 toes

Dear Neighbor,

I’m so excited to have your attention!

My name Is Sarah Cunningham, I am reaching out to the community on behalf of my family to raise awareness and money for medical expenses for my son, Alijah.

Imagine you’re a parent of a newborn. As soon as they make their entrance into the world, it's apparent your new little angel doesn’t fit the typical healthy baby criteria we all plan for. Next, imagine this child’s condition is even baffling the doctors and was a complete surprise even with prenatal care, like ultrasounds, etc. It was completely undetectable. This is a common occurrence among families affected by Apert Syndrome. This isn’t surprising, when you learn most people with Apert Syndrome result from a new mutation of the FGFR2 gene. This occurrence happens randomly for unknown reasons, it is not inherited. It is estimated this diagnosis is given to only 1 in 65,000 births according to The National Organization for Rare Disorders. I’m not a doctor, but as a mother caring for her son, I have researched Apert syndrome continuously to understand how best to care for Alijah.

Apert Syndrome is not very well known, and before my son I had never heard of it. It creates medical challenges for the patient and the specialists. He has a great team of doctors that have helped us navigate this world with Aperts. However, since Aperts is so uncommon many of the doctors we have met have limited experience if any with Apert Syndrome.

Two main characteristics of Apert Syndrome are craniosynostosis and syndactyly. A lot of the other traits and symptoms stem from these, and almost all of these require some degree of medical treatment. Craniosynostosis is premature closure of the skull. If you’re not familiar with birth or babies, most of us are born with our skull in four pieces. This protects us while traveling through the narrow birth canal. In the first two years, this separation allows rapid brain growth and development. Over time, the skull will usually fuse together slowly for better protection for the brain in the outside world. However, with Craniosynostosis prematurely closing the skull, it causes issues with the skull and brain growth. It also creates other distinctive facial features. These structural changes of the face can cause even more problems. These issues include, but are not limited to respiratory issues, difficulty feeding/eating, vision problems, hearing loss, and chronic ear infections.

Due to Alijah’s craniosynostosis (specifically Bilateral Cornel Craniosynostosis), he had his first major surgery in February of 2020 at 9 months old. During this surgery, distractors were positioned to redirect his skull growth. This was followed by another cranial surgery in December of 2020 to remove the distraction hardware and reconstruct the front of his skull.

Since then, he has had a cleft repair and tubes put in his ears. He also attends physical and speech therapy regularly to increase success of developmental milestones. He is growing and learning amazingly. His resilience is inspiring. His joy is humbling, and his smile is infectious.

Now that Alijah is three and doing so well, it’s time to move forward with our next major surgery to address his syndactyly. Syndactyly Is webbing or fusion of the hands or feet. Apert presents both, typically bilaterally. Usually, our hands and feet are webbed in early development. At a certain point, your genes tell you fingers and toes to separate. This didn’t happen the same for Alijah. This seemingly simple, none- life threatening feature complicates daily life for those with Apert Syndrome. If you think about everything you use your hands for today and how the spacing of your fingers allowed movement and gave you a grip, you get some insight to how this complicates things for those with Apert Syndrome.

As we move forward with this next chapter, it has had its ups and downs. We have consulted with two doctors locally and one in Shreveport, LA that are not particularly experienced with the severity of Alijah’s hands. They are also not confident in being able to provide Alijah with ten fingers and ten toes. However, we have found a Doctor in Dallas, TX who specializes in Apert Syndrome. This doctor is excited about conducting a procedure that will separate all of Alijah’s fingers. This doctor and his team have planned to perform the syndactyly release of the hands and feet simultaneously to minimize the number of surgeries. This will still be a two-stage surgery. Unfortunately, with this doctor being out of our resident state, Alijah’s insurance will not cover the surgery. The quote I received for the first stage is $39,000. My plan is to try to raise enough for both surgeries before the first is performed, just for the peace of mind during the healing and recovery process before heading back into surgery for him.

Please keep us in your prayers as we grow and learn about the amazing abilities Apert Syndrome has to offer. We welcome and appreciate all support, prayers, and love. If you would like to donate, we have a GoFundMe set up and we will also be posting updates there of Alijah’s Journey to Find His Ten Fingers and Ten Toes. If you are unable to donate, we ask for your prayers and support and for you to share our story with your friends or family!

Thank you for taking the time to learn about our journey.