Kehlani (Drye) Drye

UPDATE (April 27, 2026): We were blessed with a wheelchair van donation! Thank you MD Department of Technology! Once the donor gives permission, I will share more photos. Now I lowered the campaign goal to $50,000 to cover van repairs/maintenance, her hippotherapy, adaptive trike, respite care, travel expenses and more.

Here is her story thus far …

Kehlani is a 5-year-old fun-loving student at Yorkwood Elementary and a former full-time scholar at La Petite Academy. She was born with no medical challenges and was meeting all milestones until she started falling, crying a lot and losing eyesight, standing, walking, grasping and speech abilities at 13 months. She was diagnosed with a very rare degenerative neuro disorder called INAD/PLA2G6 that causes a child not long after birth to lose all “normal” functioning. The ocular disorder is known as nystagmus, which has been improving, is also part of the disorder.

She is able to make modest progress with intensive and constant therapies as well as one-to-one care at school and home. The one thing that has never changed is Kehlani’s infectious laugh and love for family time, eating, enjoying active play at childcare and worship services at Huber Memorial. She is getting back on the upswing to a gait trainer in school wither fabulous PT who has known her since Kehlani’s Infant and Toddlers days. Also her extraordinary home PT coordinates care with her school PT and hippotherapist for even greater gains as we await Kennedy Krieger for a new walker for home and community. We are excited about even more new PT therapies at Hopkins starting April 30!

Though this condition is said to take most children at age 10, we have much greater hope for Kehlani as everyone in her life cheerleads her on despite setbacks that even the flu can bring to a body with low muscle tone in every joint. Do you know that Hope is a person–Christ Jesus! We are letting Him write her story.

In 2023 Kehlani’s Mom needed more help with a little sister. So Kehlani moved in full-time with her Grandma full-time to get full-time care and transportation. Though Grandma’s work schedule is limited, she is blessed with generous donors like yourself and contract jobs in special education, AmeriCorps, subbing with Baltimore City Public Schools and most recently an AI contract.

The more speech, OT and PT services she gets in addition to hiring a one-to-one (to come), the more it sparks life in Kehlani despite setbacks though she is able to still self-feed. Maintaining a sitting position with a curved spine can really be a challenge not to mention the severe sleep apnea that saps her strength (2025 laryngeal cleft and bronchial surgeries and 2024 surgery at Hopkins that has helped to open her airways). Having a one-to-one full time in childcare/school/home/community for safety and support will also help promote safety and potty training now so very challenging. Being among her peers brings her such delight as she learns her numbers, colors, alphabet and begins to form short sentences.

Kehlani enjoys going outdoors and would love adaptive trikes, furniture and such as well as consistent hippotherapy (a $800-plus per session special pony therapy) to strengthen her core. We had to take a break in early April 2026 as her left hip has rotated backward and has given her a new challenge.

Please donate to Help Hope Live in Kehlani’s honor today, and ask your friends and family to give, too! We would love to plan some fundraisers in Kehlani’s honor, too, so if you can help with that, please contact her Grandma at [email protected]. Thank you for your generous support!