Some of you know that I lost my son, Jordan, back in
September 2016 to a debilitating muscle wasting disease called Duchenne
Muscular Dystrophy. Jordan was diagnosed just short of his 5^th
birthday and at the time we were told he would be in a wheelchair by the age of
9 and would most likely die by the age of 14, they really were as blunt as that
when they told us. However, Jordan didn’t go into a wheelchair full time until
he was 12 years old, and that was mainly down to the fact he was at Secondary
School and each lesson was in a different classroom and he just couldn’t keep
up with the other children, so in order to get to the lessons on time he had to
go into the chair. Jordan passed away just six days short of his 22^nd
birthday on 13^th September 2016, so all in all he did brilliantly,
he proved them wrong. Jordan had a great life, just not a great quality of life
but he was a real character right until the very end. The reason these boys die
so young is because the heart is a muscle, so that too slowly wastes away.

Jordan was taken into hospital at the end of June 2016
weighing less than 5 stone (31.75 kg), he had been struggling to eat due to the
muscles in his throat slowly wasting away, he had to use a feeding tube, he
couldn’t do anything for himself but he still always had a smile on his face.
He was doing brilliantly in hospital and we were told at the beginning of
September he would be able to go home in a week’s time, we were just waiting on
training for his feeding tube. Although we knew what to do having watched the
nurses do it for the last eleven weeks we had to have training by someone
qualified to do so.

Just as we were getting excited to hear that Jordan would be
coming home my niece rang me on September 10^th to say her Mum (my
sister in law, who is more like an actual sister to me) had collapsed at home
and was in a coma. She was diagnosed with a subarachnoid hemorrhage and
remained in a coma for 8 days, we didn’t tell Jordan because we didn’t to upset
him, he was very close to his Aunt. On September 13^th Jordan passed
away suddenly, just days before we were expecting to take him home, and six
days short of his birthday. We couldn’t tell my sister in law that Jordan had
passed away because the Doctors were worried it would have a lasting effect on
her brain. She remained in hospital for a long time whilst she recuperated, we
had Jordan’s funeral on October 3^rd and everyone had to keep this
awful news from her. I will never forget the day we told her Jordan had passed
away, and we had already had his cremation, although she was slowly getting
better, she was still in hospital at the time.

We had known for 17 years the day would come when Jordan
would no longer be with us, but those years of knowing didn’t make it any
easier when the inevitable happened. I try to be strong and always appreciate
that there are others out there so much worse off than us, I brought my
children up to think like that too, and my two daughters have the kindest
hearts probably due to having a brother with a terminal illness. However,
throughout August, September and October 2019 (three years later!) I was really
struggling with Jordan no longer being here with us, I miss him terribly,
during this time I felt lost and lonely, I find it really difficult asking for
help and I hate to be a bother to anyone. I eventually kicked myself up the
backside towards the end of October and decided to sign up for the Brighton
Marathon, doesn’t that just prove how I wasn’t in the right mindset! Running is
not only great for your physical health but for me I find it great for my
mental health too. The Brighton Marathon has been cancelled three times due to
the pandemic and then when they finally settled on a date it could go ahead we
were unable to do that day so changed it to the virtual London Marathon
instead. Along with my niece Paige (it was Paige’s Mum who was in the coma) we
shall be running in the Virtual London Marathon on Sunday October 3^rd
2021, which will be 5 years to the day that we held Jordan’s funeral, raising
money for Action Duchenne in memory of Jordan.

If you can spare anything it will be greatly appreciated,
money is tight for many so the odd £1 or two all adds up, please don’t feel you
have to donate a large sum of money.

Thank you for taking the time to listen to my story.

Jordan was a funny, cheeky, kind hearted young man with a very dry sense of humour and we miss him terribly. Jordan closed his eyes for the last time and went to sleep forever on 13th September 2016, just six days short of his 22nd birthday. We hope to one day hear the news that a cure has been found so that no other child has to suffer this debilitating disease, and no other parent has to say goodbye to their child at such a young age.

Every penny you donate helps support life-changing work. You are making our three objectives possible:1) DEVELOPING EFFECTIVE TREATMENTS FOR ALL by funding research, educating clinicians and researchers, supporting clinical trials and campaigning for access.2) BUILDING A COMMUNITY by uniting families, educating about Duchenne and raising the profile of the condition to a wider audience.3) STRIVING FOR A MORE INCLUSIVE SOCIETY by promoting the importance of human equality, day-to-day acceptance of disability and accessibility for those with Duchenne.