A 10-year-old boy with Duchenne Muscular Dystrophy has been described as a "walking miracle" by his parents as he continues to defy the odds due to life-lengthening treatment.
Alfie Pentony was diagnosed with the life limiting disease when he was four years old, starting his family on a long journey to find treatment that would allow him to live a healthy and fulfilled life.
His parents Colleen and Jamie have said that Alfie should be wheelchair bound at his age due to his condition and the muscle wastage it causes, but thanks to experimental treatment he has received in America, he is able to run, play football and even have a few sparring sessions at a local boxing club.
Colleen said: "When Alfie was first diagnosed with Duchenne Muscular Dystrophy we were not willing to accept what the future would have in store for him and began to research the condition and all of the possible treatments that were available.
"Sadly, there is no cure for Duchenne so we had to attempt to access experimental treatments and were willing to do anything so that we could give Alfie the life that he deserves.
"Thankfully just over three years ago we managed to get a treatment in America which has proven to be very successful for him and the progress that he has made during that time is incredible.
"A few years ago Alfie would struggle to walk up or down the stairs and should be using a wheelchair now due to muscle wastage, but due to the treatment he is receiving that has not been the case and he is now running up the stairs, playing football with his friends and even enjoys a bit of boxing.
"While this can be very tiring for Alfie, for him to be able to do this at his age is something that we have never imagined and his success with the treatment has inspired people from across the world."
Alfie currently travels to America for the treatment every four months and due to it costing between $13,000 and $14,000, Colleen is constantly fundraising and gathering donations in order to ensure that he is able to continue receiving it.
On March 18 she is set to begin a special fundraiser where she is going to walk 79km in 15 hours and 43 minutes, with her finishing on Mother's Day.
The challenge has a symbolic meaning to the Pentony family as the 79kms represent the 79 Exons in the dystrophen gene and the time represents the exact moment that Colleen received the phone call that changed their lives forever.
Colleen continued: "Every year I do something in order to try and raise funds to continue Alfie's treatment and this year I am doing my toughest one yet.
"I am going to be walking 79km in 15 hours and 43 minutes, with this representing the number of exons in the dystrophen gene and the exact time that I received the phone call to tell me that Alfie had been diagnosed with Duchenne.
"Mother's Day is also a very special occasion for us because it is also the first day that Alfie was able to jump by himself following his treatment.
"It is going to be a tough walk for me and I am thankful that I will be joined by some very good friends and hopefully Alfie will be able to join me for the final stretch.
"I would just like to give a big thank you to everyone who has supported us so far over the years for the help that they have given us. We never would have imagined that Alfie would be doing so well now and it is all down to the treatment and support that he has received from people across the world."
If you would like to donate to the Pentony Family's appeal, please follow this link.
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