Tag: Wheelchair Ramp

Ethan spent the first seven years of his life without an official diagnosis other than a general diagnosis of mentally disabled.  That changed when Ethan was seven and experienced a seizure where he ultimately ended up at Children’s Healthcare of Atlanta (CHOA).  Fortunately for Ethan, the neurologist at CHOA specialized in what would eventually become Ethan’s diagnosis, Mecp2 Duplication Syndrome or M2DS.  M2DS is a rare genetic condition causing many issues such as severe intellectual disabilities, impaired motor function, spasticity, speech, gastrointestinal, and respiratory issues.

Ethan is able to enjoy life in general; he is still mobile and eats soft foods by mouth.  He has had setbacks over the years but he continuously proves how strong he is time and time again.  Ethan’s mobility has declined over the past few years due to severe seizures.  Ethan’s Sunshine makeover includes a wheelchair-accessible bathroom and wheelchair ramp going into his house to make daily life a little easier for everyone.

Photography by Marcelino Aguilar Photography

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Like most pre-teens, 11-year old Arion seems to grow like a weed despite his many disabilities. As he has grown, it has become more difficult for his parents and caregivers to move him and care for his needs. There is a step up from the entry door of his home, making it difficult for wheelchair entry, and his bathroom is not accessible.
Arion was only 1.6 pounds when he was born prematurely. In addition to living with Cerebral Palsy, he has ROP, Retinopathy of prematurity, causing visual impairment. Another complication of his premature birth is Necrotizing Enterocolitis (NEC), a disease that affects the intestine of premature infants, sometimes called Short Bowel Syndrome.

Like many families with pre-teens, Arion’s family is always “running around,” but instead of sports and scouts, his days include frequent visits to a GI Doctor, a lung doctor, a psychiatrist, an eye doctor, speech therapy, OT, PT, and Hippo Therapy. He also goes to school four days a week and receives some homebound services. When returning home, from a busy day, they are challenged with safely getting Arion up the step and into their home. Things are complicated, even further, when it is time to transfer Arion to a bath. The chair doesn’t fit through the bathroom door. Arion has grown to a size that makes transferring to their small tub dangerous for both him and his mom.

Arion loves music, and when someone sings to him, as well as cars and toys that make noise and music. A modified entry and an accessible bathroom will make for a safer home. It will reduce the risk of injury and eliminate physical stress on his parents and caregivers. With a better quality of life for the whole family there will be more time to sing and enjoy music with Arion.

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