When Jack Evans was born his family were told he wouldn’t live past two years old. Jack is now 17-years-old but as his 18th birthday approaches his family are facing new challenges.
Spinal Muscular Atrophy is a genetic disease that meant Jack was very sick as an infant and still requires care 24 hours a day to meet his needs. Jack is in a wheelchair for posture and mobility, is tube-fed, and needs assistance with breathing.
Jack had his first stay at Very Special Kids Hospice when he was two-years-old and since then has stayed at the hospice more than 50 times. This allows the Evans family to do things they normally couldn’t do, including getting a full night’s sleep.
“By taking care of Jack for us, Very Special Kids have taken care of us as a family” says mother Lisa Evans.
“The service has allowed us to nurture ourselves and provide some normality for my other children, and for Jack, going to Very Special Kids is his home away from home. He feels very safe there – it’s a sanctuary for him.”
But when Jack turns 18 next May he will no longer be eligible for support through Very Special Kids and Lisa says she finds herself dreading his 18th birthday.
Very Special Kids helps support families through the transition from child to adult support services but many families like the Evans find this transition quite tough.
“Very Special Kids have been the difference between surviving the journey and remaining intact as a family. I am anxious about how my life will look and feel after Jack turns 18.”
Thankfully there are organisations out there that are looking to find housing solutions for younger adults with a disability. The Summer Foundation is one of them.
Established in 2006, the key aim of the Summer Foundation is to change human service policy and practice related to young people in nursing homes.
“This is really promising” says Lisa, “I want options for Jack after 18 that not only meet his physical needs, but are age appropriate and add value to his quality of life as well as mine. Long term I would like to dream that there is a place that Jack could call his home outside ours.”
Help support children like Jack and his family:
Very Special Kids are proud to join The Summer Foundation and Isabella and Marcus Paediatric Brainstem Tumour Fund as an event beneficiary for the Upstream 50km Challenge.
The Upstream Challenge is a 50km or 20km walk along the Yarra river trail on Saturday 5 November. When you register you can choose to donate funds to one of the three beneficiaries, or all.