As many friends and family already know, John and Haley’s daughter, Lyla, our sweet granddaughter, was diagnosed in April 2023 with Angelman Syndrome.

Angelman Syndrome is a rare neuro-genetic disorder that causes physical and intellectual disabilities and has the potential to pose many other medical challenges as well. These disabilities typically require a person to have care for the rest of their life.

John and Haley along with their families, have slowly shifted from heartbreak and grief to focus on faith, hope and determination. We are passionate about insuring Lyla’s happiness and helping her reach her full potential in life. A number of friends and family have asked how they might help, so here is an update.

For years to come, Lyla will require therapy to reach milestones and gain skills that can make her life easier.

She is enrolled in the Ohio Early-Intervention program (Help Me Grow) that should provide weekly therapy. However, Franklin County is only staffed to see her once a month for 30 minutes!! This is well below the level of therapy recommended by Lyla’s pediatrician and neurology team.

So, Lyla is also receiving therapy at Nationwide Children’s Hospital. This includes weekly physical therapy and bi-weekly occupational and feeding therapy. She is awaiting appointments with a nutritionist and a speech therapist, both months out. Therapy will help her gain gross motor skills needed to stand and walk and fine motor skills needed to feed herself someday. The goal of feeding therapy is to move her beyond pureed foods and liquid Pediasure that she gets today. Speech therapy will focus on finding the best way to enable Lyla to communicate. And finally, Lyla will require occasional EEG’s to rule out seizure activity. She has a neurology team at Nationwide Children’s and it’s highly recommended that she visits an Angelman Syndrome Clinic annually to meet with a team that specializes in this rare syndrome.

This fund is simply intended to help offset the growing expenses associated with Lyla’s medical needs. All donations will be transferred to an account set up for that purpose.

Haley has insurance through her employer, but the medical costs are growing. At a minimum, they will need to be able to cover the out-of-pocket maximum, as well as equipment or services not covered by insurance. They recently learned that Lyla reached the maximum number of annual PT visits covered by insurance. To continue her therapy, they will need to pay the full cost of weekly visits through the end of the year. We estimate this bill alone to be $6,500, and this is in addition to the growing balance they have been paying against since Lyla was born.

They are pursuing resources through the Children with Medical Handicaps (CMH) program, but it can take up to a year to qualify for cost-sharing. They are also exploring services via Easter Seals. The processes are not straightforward and the benefits are not a sure thing.

At this time we want to ensure that John and Haley never have to say no to any therapy or medical equipment recommended by Lyla’s medical team. We know that early intervention is critical!!

The good news is that Lyla is 17 months old and making significant progress in her therapies! And there is genuine hope that clinical trials and advances in gene therapy could help “angels” like Lyla face fewer medical challenges in the near future. Lyla lights up the room with her contagious smile and shows her strength and perseverance every single day. We ask that you pray for her and for a cure and consider helping us support the family and our little “Lyla girl” as they navigate this unexpected and challenging journey.

For more information on Angelman Syndrome visit Angelman.org