Jenson’s Journey
12 year old Jenson is just one of more than 8,000 children and young people to have joined D-CYPHR, The DNA, Children + Young People’s Health Resource since launching in 2023. There are many different reasons why families decide to take part in research, including direct experience living with a health condition such as Jenson and his parents.
On Jenson's 1st birthday, his parents Chantal and Garry were told that he has a life limiting condition called Duchenne muscular dystrophy (DMD), a progressive muscle wasting condition. Even if he could eventually walk, his parents were told that over time he would lose mobility as his muscles will waste away. This condition currently has no cure.
Following the DMD diagnosis, they found out that Jenson has another rare condition, a duplication of 1q.21.1, which is associated with learning difficulties, ADHD and Autism. Both rare conditions are often hereditary, so Chantal and Garry were able to get themselves and their 3 other children genetically tested. Thankfully the test results came back as negative.
Jenson’s mum, Chantal:
“Jenson loves life and certainly has lots of fun. He is unaware of the severity of his condition and because of his learning difficulties, he seems mentally unaffected by the way his body is causing him to struggle with his mobility.
"Over the years, Jenson has enjoyed taking part in health research because he loves science and wants to help others. He is proud knowing his bloods and muscle samples are sent off around the world to help researchers.”
Jenson was eager to participate in D-CYPHR to support health research and to make a difference to the future lives of children. With guidance from his parents, Jenson signed up by filling in a health and lifestyle questionnaire online and donated a sample of his spit in a saliva kit sent by us in the post.
Jenson’s mum, Chantal:
"Personally we are so thankful for D-CYPHR as it has been and continues to be difficult knowing Jenson has a life limiting condition that will affect his mobility; respiratory and heart function.
"Research gives us hope for improved care, understanding and potential treatments to prevent the agonising difficulties that rare diseases bring to families. Jenson hopes more children will participate and become DNA Research Superheroes just like him!”
A massive thank you to Jenson, Chantal, Garry and the thousands of D-CYPHR volunteers contributing to children's health research.
Play your part in health research
Jenson's contribution is combined with more than 8000 other D-CYPHR samples and researchers can use the information for research, or invite volunteers to come forward if they are eligible for a particular study.
All families with children and young people aged 0-15 in the UK can join D-CYPHR online. We need volunteers with and without health conditions to understand more about childhood health.
It’s as simple as spitting into a tube. Become a D-CYPHR volunteer today!
You can find out more information by visiting the D-CYPHR website.