Age 5, Massachusetts

Meet Ayla. Ayla is a strong, happy, and determined little girl whose smile just melts your heart. She adores watching her twin sister Sierra, playing with her dogs Gus and Penny, and going to school everyday to learn and work hard with her friends, teachers, and therapists. She loves exploring any kind of sensory play, handling instruments, and being read to. Music is what makes her happiest and she shines the brightest when her favorite song, "This Little Light of Mine", is sung. She also loves getting scruffy-beard-tickles from her Daddy and Gampy. Just like glitter has this incredible ability to stick to everything it touches, Ayla has a lasting impact on those who get to know her.

Ayla was diagnosed with Townes-Brocks syndrome one month after birth, which caused her to have a heart defect, cleft palate, critical airway, Pierre-Robin sequence (small jaw), kidney and other physical abnormalities, low vision, hearing loss, hypotonia, and global development delays.

Ayla has had over 300 medical appointments, 25+ hospitalizations, 5 surgeries, and is currently followed by 16 specialists. She needs a minimum of 18 medications daily administered by mom and dad or a continuous skilled nurse (when we have coverage). She is on a specialized formula and needs to be fed through a feeding tube.

Her Durable Medical Equipment (DME) needs include, but aren't limited to: eyeglasses, hearing aides, ankle foot orthotics, stander, hip brace, gait-trainer, high/low chair, bath chair, nebulizer machine, suction machine and respiratory supplies, feeding pump and enteral supplies, bed pads, diapers, oximeter, and oxygen.

We have primary insurance (Blue Cross Blue Shield of MA) and MassHealth (Medicaid) is our secondary insurance through the Kaileigh Mulligan Program, which is a Medicaid Waiver. The Kaileigh Mulligan Program provides MassHealth services and benefits to certain children with severe special needs who are over the income standards for MassHealth eligibility and require the same level of ongoing nursing and medical needs as a child living in a pediatric nursing home or hospital.

Access to affordable, quality health care is our lifeboat. It keeps our family afloat in very challenging circumstances. Ayla gets the care she needs while our entire family can function with some level of normalcy.

Although we have private insurance, our secondary (Medicaid) is what pays for most of Ayla’s life-saving medical equipment, specialized formula, certain medications, and all 64 hours of continuous skilled nursing at home, which allows her to go to school everyday, receive important therapies, and for us to sleep, work, clean, go food shopping, and be there for our other daughter, who needs us just the same.

As her mother, it's my duty and responsibility to protect her and ensure she has what she needs to be safe, healthy, and happy so she can reach her full potential.

Cuts to Medicaid would put Ayla's life in jeopardy and fracture our family and the life we know today.

Submitted by Ayla's mom, Angela