Jen Squires Jamison
Jen and Lauren's Half Marathon Challenge
Fundraising for Action Duchenne
Story
On the 13th March 2016, our lives changed for the better: our beautiful baby boy, Dexter Squires-Jamison was born. A chilled, incredibly happy baby, he progressed well and reached many of his developmental milestones, however when he was 18 months old, he was referred to a physio as he was still not walking very well. We saw the physio every month and by the time Dexter was 2, he was walking and we thought all was well. The physio mentioned that he was still not transitioning well (between standing and sitting etc) so thought it was best to send him for checks with a peadeatrician.
On the 25th May 2018, the day before my birthday, we attended the Doctors appointment and he mentioned that Dexter possibly had symptoms indicating a diagnosis of Duchenne Muscular Dystrophy. Shocked, numb and in disbelief that this could possibly be happening to us, I spent the next week Googling DMD, researching, hoping for other explanations, fact-finding. The statistic, '1 child in every 3,500 will be diagnosed with DMD,' haunted myself and Alban for the next seven days - we couldn't be that 1 in 3,500 surely?
On the 1st June 2018, the blood test results arrived. The worst day of our lives. Dexter was diagnosed with Duchenne, a condition we had never heard of but which suddenly robbed us of the life we had expected to be able to live with our son, and the life we had wished for, for our amazing little boy. Duchennes is a condition that can affect ANY family.
Duchenne Muscular Dystrophy (DMD) is a rare genetic muscle wasting condition affecting around 2,500 people in the UK – the vast majority being male. The body does not produce a protein called dystrophin which is needed for muscle function.
Usually diagnosed around the age of 4 years, parents are told the devastating news that the life expectancy of their child is around 30 years – the worst news you could ever expect to hear. DMD severely affects quality of life; in time, a wheelchair is used full-time and eventually all of the muscles in the body stop working. Ventilation is needed to assist with breathing and death usually occurs from heart failure.
There are currently no cures or treatment options available to the entire population who have the condition.
In the last 8 months we have become an even stronger family, stronger than I ever thought. We are now trying to be proactive in our everyday lives and living for every single moment. Within a month of Dexter's diagnosis, I felt I needed to do something. I signed up to a running club and decided to enter the London Landmark half marathon on the 24th March 2019.
My wonderful friend, Lauren Cleaves, has agreed to join me in this challenge. She, amongst many others, has been the most incredibly supportive friend and no matter the time of day, has been on the other end of WhatsApp, the world and the staff room!
Action Duchenne fund cutting edge technology and clinical trials into potential treatments to benefit everyone living their lives with Duchenne and Becker muscular dystrophy. They campaign for equality for people with disabilities and provide life lines through support for families.
This is the first time Alban and I have chosen to speak publicly about the Duchenne diagnosis. We are aware that you may wish to show your support through messages and sympathy, but as it is still very difficult for us to speak publicly about this, instead we ask that you show your support and encouragement through your sponsorship of Lauren and I, as we prepare to take on the half marathon.
On the 25th May 2018, the day before my birthday, we attended the Doctors appointment and he mentioned that Dexter possibly had symptoms indicating a diagnosis of Duchenne Muscular Dystrophy. Shocked, numb and in disbelief that this could possibly be happening to us, I spent the next week Googling DMD, researching, hoping for other explanations, fact-finding. The statistic, '1 child in every 3,500 will be diagnosed with DMD,' haunted myself and Alban for the next seven days - we couldn't be that 1 in 3,500 surely?
On the 1st June 2018, the blood test results arrived. The worst day of our lives. Dexter was diagnosed with Duchenne, a condition we had never heard of but which suddenly robbed us of the life we had expected to be able to live with our son, and the life we had wished for, for our amazing little boy. Duchennes is a condition that can affect ANY family.
Duchenne Muscular Dystrophy (DMD) is a rare genetic muscle wasting condition affecting around 2,500 people in the UK – the vast majority being male. The body does not produce a protein called dystrophin which is needed for muscle function.
Usually diagnosed around the age of 4 years, parents are told the devastating news that the life expectancy of their child is around 30 years – the worst news you could ever expect to hear. DMD severely affects quality of life; in time, a wheelchair is used full-time and eventually all of the muscles in the body stop working. Ventilation is needed to assist with breathing and death usually occurs from heart failure.
There are currently no cures or treatment options available to the entire population who have the condition.
In the last 8 months we have become an even stronger family, stronger than I ever thought. We are now trying to be proactive in our everyday lives and living for every single moment. Within a month of Dexter's diagnosis, I felt I needed to do something. I signed up to a running club and decided to enter the London Landmark half marathon on the 24th March 2019.
My wonderful friend, Lauren Cleaves, has agreed to join me in this challenge. She, amongst many others, has been the most incredibly supportive friend and no matter the time of day, has been on the other end of WhatsApp, the world and the staff room!
Action Duchenne fund cutting edge technology and clinical trials into potential treatments to benefit everyone living their lives with Duchenne and Becker muscular dystrophy. They campaign for equality for people with disabilities and provide life lines through support for families.
This is the first time Alban and I have chosen to speak publicly about the Duchenne diagnosis. We are aware that you may wish to show your support through messages and sympathy, but as it is still very difficult for us to speak publicly about this, instead we ask that you show your support and encouragement through your sponsorship of Lauren and I, as we prepare to take on the half marathon.
Thank you from myself, Alban and Dexter (and Lauren!) X
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