Together for Short Lives
Call the Helpline 0808 8088 100

Jenson’s story: I hope other families won’t have to wait as long as we have.

On his first birthday, we received the worst news imaginable

“Jenson’s crawling was delayed and so was his speech, but we never thought in a million years that one day we would get a voicemail telling us we needed to be seen urgently at the hospital. It was Jenson’s birthday and the whole thing was just completely unexpected. It was more devastating than you could ever imagine. To hear those words: Duchenne muscular dystrophy (DMD). Everything went dark. It just felt doomed.”

On Jenson’s first birthday his family received the news that their precious little boy, Jenson, had Duchenne muscular dystrophy. A completely unexpected diagnosis: “He progressed slower than we had expected, but we never dreamed there would be an underlying illness. We thought it might be a thyroid problem, something easily fixed.”

Everything went dark

On what was supposed to be a day of celebration, the family received the heartbreaking news: “In that moment, life just changed. We had all these dreams for our little boy, and suddenly, just like that, everything is different.” Chantal’s daughter had to sit in the waiting room while they received the news, and the family were sent home for a month, reeling from that dreadful day.

“It was just before Christmas, it was an incredibly lonely time. There was no support. No counselling. We were told there was nothing locally to help us, a postcode lottery. But we had other children too, and so life had to carry on for them. When you are a parent, there is no choice.”

Getting out of bed every day became a struggle: “Every day, just getting out of bed after that day became so difficult. But the horrible feelings had to be put aside for the other children.”

As the years passed

As the years passed, things progressed very slowly, DMD is characterized by weakness and wasting of the muscles. “Things have moved, thankfully, slowly for Jenson. He is still walking which we are so grateful for, but we know that his mobility could go any day.” But life has been a struggle for the family: “Every day is a fight when your child has a diagnosis like DMD. It’s always a struggle to get the equipment we need. We know we are not alone in this. It just feels like nobody is ever listening to me. There are relentless phone calls, appointments, people to see and things to arrange for him. But the biggest impact has undoubtedly been on his siblings.”

Jenson’s siblings

Jenson has three older siblings, they are 21, 18 and 16 years old. Jenson’s illness, particularly his challenging behaviour, has been very difficult for his brother and two sisters: “Jenson’s diagnosis has had a massive impact on his siblings, absolutely huge. They have been affected in different ways including high anxiety, depression, eating disorders, self harm and suicidal thoughts and we have struggled to get the help they needed.”

The family have struggled to access any support for Jenson’s brother and sisters: “The reality is, there is just no support for them. We have been waiting nine years, but nothing ever happens. The children have become withdrawn and have admitted that they find it very hard to talk about how they are feeling. My heart is broken for them.”

Jenson’s behaviour often results in him throwing items, and has caused floods and fires in the house. There are so many outbursts. Holidays are impossible, and special occasions are often skipped: “There have been many times, for example during exam periods or at special events, where I haven’t been able to give Jenson’s siblings the support they need because Jenson takes all my time. I dream of being able to spend time with his older siblings and my husband. But when will I ever be able to do that?”

Jenson often chooses to communicate in growls and roars, and it can make for a very stressful home environment: “I am worried about the long-term effect on my other children, we can’t go out together as a family, it is too chaotic.” If Jenson feels like he isn’t getting all of our attention, he can become very vocal and demanding.”

Getting support

Chantal made contact with Together for Short Lives’ helpline when she read about the Cost of Living support fund: “It has been a huge help, we are so grateful, it’s just one less thing to worry about. I had to give up my job to care for Jenson, and we have had to have major adaptations to our home for him, and everything is so expensive right now.”

Looking forward

“More than anything, I wish my other children could have been supported years ago. We have had to miss parents evenings, special occasions, and I have spent so much time in hospital with Jenson. But even though life can be hard, he is a very special little boy, and his smile brightens up all of our lives. But there is no doubt that siblings of seriously ill children need more help. I am so passionate about it. One day, I hope that will be available to them. I hope other families won’t have to wait as long as we have.”

Family stories