Dylan, the oldest of three sons of Matt and Louise Jessop of Mountain Creek is 9 years old and has Sanfilippo Syndrome. It is a rare genetic, neurodegenerative metabolic disorder, characterized by mental and physical deterioration, mild physical defects, and sleep disturbance. The average life expectancy is 14 years of age.
The progression of the disease means that Dylan now requires 24 hour care and all his daily life skills attended to. He has lost his speech and is now unable to play with his brothers Ethan and Ayden, or communicate with them. Dylan has lost nearly all of his gross motor skills and now requires a wheelchair.
Being wheelchair bound made the family car no longer suitable. Dylan’s father Matt has works away for extended periods to support the family and Dylan’s mother Louise has been coping with help, but lifting Dylan who weighs 32 kg when she herself only weighs 52kg, became too much for her especially as she had to lift a younger child in to a car seat as well.
A characteristic of the disease is seizures, so a suitable vehicle would also need to be on in which Dylan could be seated so his parents could keep an eye on him .
Three other local Lions Clubs combined with the Lion’s Club of Mooloolaba agreed to raise the money to pay for the rear wheelchair lift if the family could raise the money for the vehicle. The family successfully fund raised themselves to obtain the money to buy the vehicle and are very thankful for the donations received.
Matt Jessop said, “He was uplifted and overwhelmed by the generosity of the Lions, individual donations and the community spirit that has made it possible to acquire the vehicle and hoist to improve Dylan’s and the family’s quality of life.”
“It will make the limited time left with Dylan, which is only a few years, all the more memorable because we will only have memories left at the end. To have something like this to go out and achieve those memories, to do the things other families would, how can you put a price on that?”
The Maleny-Blackall Lions Club, The Maroochydore Lions Club and the Maroochy North Shore Lions Club combined with the Mooloolaba Lions Club to raise the funds needed for the rear wheelchair lift.
The Lions Clubs are very proud to have been able to make life easier for Dylan and his family.