Moin Younis

Charity ambassador helps and inspires other young people despite suffering from a rare genetic skin disorder that needs hours of agonising treatment every day

Moin has defied medical opinion throughout his life, since the moment his parents Mohammed and Shafia were told he would not live beyond his first birthday.

Now 17, the fanatical Aston Villa fan inspires others around him as an ambassador for Acorns Children’s Hospice, offering advice and support to other desperately ill children.

He was diagnosed with Epidermolysis Bullosa when he was just two months old.

The life-limiting condition means he lacks the protein needed to bind the layers of his skin together, so it tears and blisters at the slightest touch.

Moin - one of the only people in the world with the most severe type of EB - has scarring across his body as well as wounds which will never fully heal.

He says: “You can imagine cutting yourself or burning yourself - now just think for a second how much it would sting. That’s pretty much how I feel everywhere. I go to sleep at night hoping to not wake up the next day, so I do not have to go through this routine.”

Each day Moin spends over an hour soaking his bandages in the bath so they can be removed before Shafia applies fresh bandages - a painful process that sometimes takes up to five hours.

One of the only things that helps him forget the constant pain is going to see his beloved Aston Villa play.

But despite his many challenges, Moin is committed to making a difference to the lives of others. In his role as a Young Ambassador at Acorns, he has a real say in ways the charity can improve its services. He gives tours to visitors at Acorns and flies the flag for the hospice through social media.

He’s creating a lasting legacy, so even after he reaches 18 and leaves Acorns this year, his input will help improve the lives of sick children for years to come.

Chris Reed, Head of Care at the Hospice in Birmingham, says: “He’s one of a kind. The challenges he faces every day are immense and I don’t know how he does it, how he carries on and maintains that funny and cheeky manner that we all love. Once you’ve met Moin you don’t forget him. He takes on life with incredible courage and guts and he’s incredibly frank and open about his struggles.”

Moin was shortlisted for Pride of Britain after winning a Pride of Birmingham Award earlier this year. In a moving speech that had the audience on its feet he said: “A lot of people take life for granted. While I am here I want to get the message out to people to enjoy life. Please, please get the most out of your life and make the most of what you have.”

Moin lives with an incredibly painful condition and one with no cure, but he is so charismatic and has such an uplifting, positive attitude, he ends up inspiring everyone around him.Pride of Britain judges

Follow Moin on Twitter | @villalegend4lif

 

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