Story
In 2020 I successfully took on a challenge to complete 200km over the summer & raise money for dementia.
In 2021 I am stepping it up a notch and taking part in a 2280-mile challenge to virtually navigate my way across the famous route 66 in America. Starting in Chicago I will plod, walk, swim, cycle & hobble all the way to Los Angeles and cross the finish line on New Year’s Day 2021.
This is a huge challenge for me as many of you know I have a fractured spine and suffer from spondylitis, so exercise is not at all easy, however my very good friend’s son has Duchenne Muscular Dystrophy and needs help to continue raising funds to get him back to America and continue his ground-breaking treatment, and I want to help.
I have also unfortunately I let my condition get the better of me over the last few years which led to mental health challenges, over eating & self-medicating. This year will be different, and I would like to ask for your help to keep me motivated and support a very important cause:
I'm raising money for the charity Fight-For-Alfie and any contribution you can offer would be wonderful, big or small every little bit helps.
Fight for Alfie & Duchenne Muscular Dystrophy:
Established in 2016, Fight for Alfie formed as a result of Alfie's diagnosis. Colleen and Jamie, Alfie's parents, needed to do all they could to save their child's life. The initial objectives of the charity were to raise awareness of Duchenne Muscular Dystrophy and fundraise the required funds for treatment for Alfie, to give him a fighting chance to survive this disease.
Duchenne Muscular Dystrophy (DMD) affects about 300,000 boys worldwide.
DMD is a form of muscular dystrophy that is caused by a mutation of the dystrophin gene—located on the X chromosome—which codes for the protein dystrophin. The absence of dystrophin in the body causes muscles to deteriorate and break down. DMD is the most frequently occurring and one of the most rapidly progressive childhood neuromuscular disorders. Due to the way DMD is inherited, boys are primarily affected.
In Duchenne Muscular Dystrophy, the child’s exons (sections of DNA that code for the protein dystrophin) are deleted, duplicated, or cause an abrupt stop in the protein production process. The impaired exons then interfere with the rest of the gene being pieced together, which results in a mutation that causes the body to lack the protein needed to protect and rebuild muscle fibers. This leads to continuous muscle degeneration and premature death.
Through the years, the charity has developed and gained a greater presence within the community. They opened their arms to help and support other families going through the same; and hence developed the key objective to promote and protect the physical and mental health of sufferers of Duchenne Muscular Dystrophy through the provision of financial assistance, support, education and practical advice.
As part of the Operation Lifeline, Alfie is one of a select few of children with Duchenne Muscular Dystrophy to receive infusions with a compound Jar914; which is used alongside mild Hyperbaric Oxygen therapy.
To make this happen the Fight for Alfie charity has partnered with JAR of Hope, led by James Raffone and their amazing supporters. JAR of Hope is the charity responsible for setting up “Operation Lifeline” and alongside Fight for Alfie they continue to search for new ways to improve the lives of children with DMD. They are currently in the process of putting in place a clinical study that has proved no side effects to the medicine. Hopefully, this will happen early next year and together they can help more boys with this horrible disease.
Any donation you can offer would be extremely gratefully received. So far we have raised an incredible £810 towards the £2280 target.
Thank you for reading and thank you for your support, it really does mean a lot to me.
I will share regular updates of my journey so far with you throughout the year xx
To see my journey so far please click on the original fundraiser on Facebook using the Original fundraiser link