
Help get the equipment he needs
Donation protected
Joel is 9 years old and was diagnosed with Pallister killian syndrome at birth. A very rare chromosome disorder that occurs to very few children.
The characteristics that Joel identifies having are a developmental delay, very low muscle tone, unable to walk, talk ,sit up, scoliosis, has dislocated hips and shoulders. Joel stops breathing several times throughout the night, therefore requiring him to wear a machine at nights to help him to breath when that happens accompanied with another machine to monitor his heart rate and oxygen levels.
Due to the syndrome Joel also has hyper pigmentation in his skin, visual and hearing impairment, chronic seizures which he's on medications to try to control, inability to eat orally, therefore requiring G-tube feeding for his nutrition, along with other physical characteristics that most with Pallister killian children have. With this being said, Joel is fully wheelchair bound and connected to the G-tube for feeding throughout the day and is
deaf/blind.
Joel recently moved to the Dufferin county area in February 2018. With Joel's diverse needs leads his family having to renovate their home to allow better accessibility and quality of life for Joel. We would like to reach out to the cyber world in hopes to find help to fund for the costs of what is needed to allow Joel to have the fulfilling life he deserves to have. In order for Joel to have better accessibility in the home he requires an elevator that goes from his room on the second story of the house to his equipment room on the main floor. Currently his mother and father have to carry him down the stairs. Due to his mother working part time because of Joel's needs and his father working long hours. Their schedules are never consistent therefore leaving Joel's grandmother to care for him when both parents are working.
With this being said Joel tries to attend school on a regular basis but the home does not have an accessible wheelchair ramp for him to use to go on his bus. This makes it difficult for anyone to get him ready for the bus as there is constant transferring from his bed upstairs then down the stairs to go outside. Joel is a fast growing boy and soon it will be nearly impossible to carry and transfer him. We are looking for as much support as possible. This has been far from an easy journey for Joel and his family. Let's gather together to make the rest of his journey just that much more accessible and worth while for him. thank you so much.
Organizer
Judith Harriott
Organizer