Medical Expenses for Layla Due to Rare Disorder

Hi, my name is Phylicia, and I created this fundraiser for my 16-month-old niece Layla who was diagnosed with a rare genetic disorder called Pendred Syndrome this week. She was born with bilateral sensorineural (moderately-severe) hearing loss. It was devastating learning about this, and just as my family began to accept this new reality, we were hit with the unexpected news of this rare disorder. Layla had to undergo anesthesia for an MRI Brain scan which revealed the devastating diagnosis.

Along with this new diagnosis, doctors confirmed she developed torticollis and EVAS, which is linked to this rare genetic disorder. Although this diagnosis begins to explain why she was born with hearing loss and is often off balance when walking, down the road, she will likely develop more health issues. With Pendred Syndrome, her thyroid and kidneys may be affected. She can develop a goiter in her thyroid and will likely need cochlear implants as the disorder progresses, rendering her hearing aids useless. Due to this new diagnosis and prognosis, there would be ongoing and frequent testing, routine CT scans, and specialized doctors added to her already extensive list of doctors she is already under the care of (from her original hearing loss diagnosis).

Layla would now require individualized daily care throughout the day, especially due to safety issues because she is off-balance. She cannot be in a regular childcare facility like other kids, nor would she be able to go to a traditional school.

Her mom (my sister), Alicia, is a New York City Middle School Teacher. She loves her job dearly and wants to be with Layla, especially at this critical time, but she cannot afford to leave her job because Layla is covered under her medical insurance and needs it now more than ever. Putting on a brave face and teaching students while not being with her child, especially right now, is unfathomable.

The co-pays, especially for specialized care and doctor’s appointments, add up and are incredibly costly, especially now that Layla requires more specialists on her medical team. Down the line, one of Layla’s parents may be forced to quit their job to provide the individualized care she requires and to be able to take Layla to her many appointments because they don’t currently have the resources and money to hire someone.

Since Layla's birth, the new diagnosis and unexpected twists and turns have been tough to digest for her parents and our family. Every penny counts for them right now, so they can begin to make crucial decisions and navigate this new normal for themselves and baby Layla.

Layla is the sweetest baby, with an infectious smile that lights up any room she walks into. Please keep Layla, my sister, and my brother-in-law in your prayers. Thank you for your support and love during this difficult time!

To learn more about Layla’s rare diagnosis, go to https://www.nidcd.nih.gov/health/pendred-syndrome#what

To learn more about Baby Layla, please click here!