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. He loves football and the police; too much at times to the point it can sometimes get him into trouble.
Put yourselves in my shoes for a moment; you receive a phone call from the school that your child with disabilities attends. Immediately your heart is in your throat and you fear for the worst. The drive to the headmistress’s office is the longest of your life and obviously every light turns red. As you push the heavy door, you are greeted with your son’s smiling face and the stern headmistress. Then you find out why you have been called; your son’s love of the police has gone too far and he has tried to arrest another student.
The only other person that loves Jai as much as I do is his older brother.
Together, we have been through ups and downs and there were times when I thought I would lose them both. Now, our family is stronger than ever.
When they are together, it doesn’t take long for the boys to fall out and even though Jai is younger, he gives as good as he gets.
Jai’s father left us before he was born and I didn’t have a lot of family that I could depend on other than my older brother Bhajan. During that time, he was the sea of calm during our storm of uncertainty. His love for me and the boys always took priority over any mistakes I may have made and his support was always a guiding light. One of the many things Jai and I have in common is that we both know how it feels to have a loving older brother.
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.
Even on the darkest of days, kindness came in the most surprising ways.
When one of our family friends became unwell, she stopped preparing food for the local community. The work was too much for her but she always managed to find the time and energy to make fresh samosas for Jai. And believe me, he knows the difference if they come from anyone else. Even mine won’t cut it.
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. Every Wednesday, he has to take 15 tablets and by Thursday he is exhausted; although he is never too tired to hug his Grandad every morning.
Everyone who has supported us throughout Jai’s life has been like our surrogate family. Anne Cheesbrough who is our Sense 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. He makes people laugh, brings them together and he has even been the cause of at least one wedding!
Jai is Punjabi for victory and he fits that name like it was made just for him. When I see how far we have all come, every day for all of us is a victory. We have cobbled together a large and diverse family with me and my sons at its heart. Jai’s wish for the future is to be independent and live on his own with me close by. Everyone around him works tirelessly to make this a reality because they also see Jai as part of their family.
This is what they tell me at least, but I know that deep down, they are all worried that they will be next to be arrested by Jai.