Elmahadi’s Story
Remember Elmahdi? Last month we shared how we worked with Rehabilitation Equipment Professionals to purchase this reverse walker to help Elmahdi. How’s he doing now?
Ari’s Story
Ariadne (Ari) has Caudal Regression Syndrome/Sacral Agenesis. She is missing part of her spine from the L2 vertebrae to her coccyx. She ambulates using crutches and a wheelchair when she tires. She is 8 years old and wants to ride a bike but due to her legs knows she can’t ride one like her sister’s. Since her ambulation is directly correlated to her fitness we are looking for ways to keep her active and healthy. This is why we have been thinking about a hand cycle but have not been able to afford one for her.
Dillan’s Story
Dillan was born with a diagnosis of PFFD, proximal femoral focal deficiency. With this diagnosis, children can further suffer from leg length discrepancy, fibular memimelia, join instability and muscle weakness. Dillan has had prolonged mobility issues and has undergone multiple surgeries to assist with her diagnosis.
Forte’s Story
Forte was born at 25 weeks and spent the first 4+ months of his life in the NICU fighting to grow and thrive. He suffered multiple obstacles including 8 intubations, a perforated intestine, ROP surgery, and brain injury resulting in periventricular leukomalacia.
Ella’s Story
When Ella was 2 years old, she suffered an intraventricular hemorrhage. A CT scan revealed a large arteriovenous malformation (AVM) that was deemed inoperable. Unfortunately, that AVM has ruptured multiple times throughout Ella’s young life and has resulted in deficits in her mobility, motor control, and communication abilities.
Abenezer’s Story
Abenezer is a 9 year old born in Ethiopia. He was born premature and diagnosed with Cerebral Palsy at age 2. At age 5, Abenezer and his family moved to the U.S. At school, he began using equipment such as wheelchairs and walkers and at PT, tried out treadmills, swings and tricycles.
Mary’s Story
Mary is a 5 year old with global developmental delay, hypotonia and intractable epilepsy resulting from a pathogenic variant in the SYNGAP1 gene. Due to Mary’s limited motor control and coordination she is unable to steer and ride a standard tricycle.
Eli’s Story
Eli is 8 years old and diagnosed with Autism spectrum disorder and hypotonia. Due to his diagnoses and muscle weakness, he has struggled with balance and coordination skills.
Gianna’s Story
Gianna is three years old and was born with FOXG1 Syndrome, a neurological condition caused by an extremely rare genetic mutation. FOXG1 has impaired Gianna’s ability to perform functions such as crawling and walking.
Micah’s Story
Micah is a five year old with Congenital Muscular Dystrophy (CMD). Due to his diagnosis, he uses a power wheelchair for mobility. He has recently been granted support for a conversion mini-van which will allow transfers in and out of the car to be safer and easier for him.
