Our Surrogate Family Of Supporters
My advice
If you have a child who is deafblind or has complex disabilities, then everything can feel overwhelming. Take a deep breath. There is support out there and people that are willing to go the extra mile. Never be afraid to ask for help and reach out. You will get through each day as it comes. There are genuine, kind people out there so if someone offers to do something for you, then take it. Every single one of these organisations and people are worth their weight in gold.My recommendations
My story
Jai is incredibly cheeky. He sees no evil, hears no evil and he is my son. People do look at his dark glasses and hearing aids. They do ask what it is like to have a child with a degenerative disease; but I always say that Jai is Jai.
When Jai was born, I didn’t want to believe that there was something wrong even when other people would point out that his eyes would shake. It took a call from Jai’s nursery before we started running tests. The not knowing was the hardest part. When we got the phone call that Jai had Alstrom Syndrome, the doctors assumed we would be relieved.
Alstrom Syndrome is one of the rarest genetic diseases in the world and has a number of different symptoms including: heart failure, light sensitivity, learning disabilities, hearing loss, obesity and Type 2 Diabetes.
Researching the condition was incredibly difficult. It was hard to believe this was happening to someone as wonderful as Jai. No one could. Jai’s eyesight slowly deteriorated and the bright lights bothered him. Every time he said that his eyes hurt, I knew that it wouldn’t be for much longer. There will be a day when his world will be darkness.
Life felt like it was returning to some sort of normality until about two years ago. Jai was diagnosed with Leukaemia. He is the only child in the UK that has both Alstrom and Leukaemia. The medication makes him sick and he has lost a lot of weight.
Everyone who has supported us throughout Jai’s life has been like our surrogate family. Sense’s Children and Family Support Worker is always there when I need her. We met her soon after Jai’s diagnosis in 2015 as she attends the Birmingham Hospital Alstrom clinic. Sense has been there every step of the way; providing hands on support to Jai, working with other organisations to make sure he gets the best care and even just being there for me to talk to.
The staff that have worked with us from Alstrom UK and Coventry Hospital have been fantastic too. Jai is the only person that looks forward to going into theatre because he knows everyone there. His story is a great example of what can happen when Health and Social Care goes right.