Update: I tore my lateral ligament in my ankle so unable to do the 100km Thames Path Challenge. So I've decided to sign up to the 106km Isle of Wight ultra marathon in May 2024!

I'm doing this in memory of my late wife Nim, who died of cancer at age 34 and for my 10 year old nephew, Arvin, who suffers from Duchene Muscle Dystrophy. 

It’s been a tough few years and I've been in some dark places where I have been tested mentally. Most of you will know my story and journey but if you don’t, here's a link: 

https://metro.co.uk/2022/09/25/i-didnt-plan-to-marry-after-my-wife-died-when-i-did-i-was-shamed-2-17436679/

Now it's time to push my mind AND my body to its limits so I’ve decided to step outside my comfort zone and run a 52K ultra marathon in one day around the Peak District in July and then 100km on the The Thames Path Challenge ultra marathon in September. I’m not a runner and certainly don’t have a runner's physique! But I’m doing this for my nephew Arvin. I found out about Arvin and this disease when Nim was ill and it was heartbreaking. Read the below from his parents, Pav and Pardeep Rainu:

“The day Arvin was born was the happiest day of our lives,
parents to a beautiful, handsome baby boy, all we ever wanted. However, in June 2018, our lives changed forever. At the age of four and a half, Arvin was diagnosed with Duchenne muscular dystrophy (DMD) which is one of the most serious genetic diseases worldwide. It is a rare muscle-wasting disease that usually affects boys where the body is unable to produce protein dystrophin which causes progressive muscle damage leading to premature death.

Nothing can prepare you to hear such devastating news. It
felt like our hearts had been ripped out. It takes away all the dreams you have for your child, and you start grieving for the life that they should have. Arvin looked like any other normal healthy child but little did anyone know, on the inside his muscles were wasting away. No parent should ever have to see their own child die or waste away before their eyes.

It’s been a struggle to come to terms with the diagnosis and
what the future holds for Arvin but we are strong, resilient, and willing to fight for Arvin. The condition is now beginning to impact Arvin’s daily life. He is unable to walk and gets around in his electric wheelchair. There is very limited movement in his arms and hands. As it is a degenerative disease, his condition will continue to worsen. This will, unfortunately, lead to paralysis and will significantly shorten his life.”

Duchenne Muscular Dystrophy (DMD) is a stinker of a disease.
It's the most common fatal genetic disorder to affect children around the world. If you've got it, you can't produce dystrophin, a protein you need to build up your muscles. As a result, every muscle in the body deteriorates. At the moment there is no cure.

The facts about Duchenne are inescapable:

• Duchenne Muscular Dystrophy is 100% fatal
• Most kids with it die in their late teens or early twenties
• Most with it are usually in a wheelchair by the age of 12
• It leads to respiratory failure, heart failure,
  and other debilitating orthopedic complications
• One in 3,500 boys is born with it and in the UK
  2,500 kids have it at the moment. You can have it, no matter where you are or what your ethnic background is. A third of all cases start in the womb, with no warning before the baby is born

Treatments like steroids are used to delay the progression, but this comes at the price of side effects. The cure is getting closer and
closer with rapid advances in medical science and recent breakthroughs in gene therapy for the first time there is some light at the end of a very dark tunnel. However, the boys need it now for a chance to live a healthier and longer life, it’s a race against time and we need to act now. Our mission is to raise awareness and as much money as possible to fund research in order to find a cure for this cruel disease. Help us reach our goal and eliminate Duchenne.

Your support can help improve both the quality and length of
life. Arvin is known to us all as one very special little boy, and if you've
been lucky enough to meet him I'm sure you will agree!!