Jaylen’s story – riding the extra mile
Six year old Jaylen Cornish is a happy kid that loves the outdoors, being around other people and playing Xbox but he also requires 24 hour care for his basic needs.
Jaylen was born with gastroschesis which is a birth defect of the abdominal wall. It meant that as a baby his intestines stuck outside of his body through a hole beside his belly button.
“When I was 28 weeks pregnant I was told he would have a very slim chance of survival” says mother Katie, “but he made it and as soon as he was born he was rushed to surgery.”
Jaylen spent the first four years of his life continuously in hospital, constantly in and out of surgery to try fix his condition.
Being 19 years old at the time, Katie quickly learnt she would be facing challenges that others her age could never even imagine.
“I had to learn to grow up very quickly. I knew Jaylen wasn’t going to be coming home so I moved house to be closer to him and start a new life at the hospital.”
Four years and 35 surgeries later and Jaylen was discharged, but the challenges did not stop there.
“I had to do months of training in order to take him home and be his fulltime carer. I learnt everything to be able to manage his condition, from connecting fluids to performing medical procedures in a sterile environment”
Because of his complex medical needs, if Jaylen were to get any small infection his life would be in jeopardy.
“It was very confronting and emotionally difficult. I knew that my son’s life was now in my hands and if something were to go wrong I could lose him.
It was the hardest thing I have ever gone through aside from seeing Jaylen go through the pain.”
Katie then discovered Very Special Kids which meant she could access respite care at Very Special Kids Hospice and emotional support.
“The Hospice is like a vacation for Jaylen, he loves all the attention he gets from the nurses and going for walks in the garden. It also means I can get some time off. ”
“The support I receive through my Family Support Practitioner is great, there’s always someone to talk to and I feel very comfortable.”
Katie also has a Very Special Kids volunteer named Amy who visits their house and plays with Jaylen so she can have a much needed break
“Amy is an amazing help. Having a sick child means you have to give up many things but when Amy comes it means I can free up time to play sport and do things I enjoy, it’s my outlet.”
Unsure of what the future will bring, Katie says she holds on to hope and keeps a positive outlook.
“Looking at my son now and knowing he’s beaten all the odds is what gets me through the day. He gives me strength”
Ride the extra mile to support sick children like Jaylen.
On the 11-17 March the Chain Reaction Ultimate Corporate Bike Challenge is taking place to raise funds for sick children like Jaylen. To sponsor a rider or to make a donation please click here.
Categories: Family News, Fundraising News, Very Special Kids News, Volunteer News