Teen Ambassador Living with Epidermolysis Bullosa Is ‘Pride of Britain’

Teen Ambassador Living with Epidermolysis Bullosa Is ‘Pride of Britain’

Moin Younis, the ambassador for Acorns Children’s Hospice, won a Pride of Britain award as a “Teenager of Courage” for his character as a leader and for inspiring other children around him to stay strong despite life-limiting conditions.

As the ambassador for Acorns, a center for children with life-limiting or life-threatening conditions, Younis offers advice and support to other seriously ill children, all while living with epidermolysis bullosa himself.

Soon after Younis was born 17 years ago, his parents were told he would probably not live beyond his first birthday. He had been diagnosed with the most severe form of epidermolysis bullosa.

The son of Mohammed and Shafia Younis won a Pride of Birmingham Award earlier this year for his contribution to the community.

The teenager has scarring across his entire body and wounds that will most likely never fully heal.

“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,” Younis said in a Pride of Britain Awards news release.

Younis has to spend over an hour each day to soak his bandages in the bath just so they can be removed and changed by his mom. It’s a painful process that can take up to five hours. He tries to stay distracted by watching his idol team Aston Villa play and by thinking of ways to making a difference in the lives of others.

The best thing about being the ambassador for Acorns, Younis says, is that his voice is heard and that he has a real say in which strategies are followed to improve the services of the charity. Younis gives tours to visitors at Acorns and flies the flag for the hospice through social media.

His impact is such that his colleagues at Acorns believe that even after leaving when he turns 18 his input will continue to live on, improving the lives of sick children for years to come.

“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,” said Chris Reed, head of care at Acorns.

In a speech, Younis 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.”

Pride of Britain is a joint initiative of The Daily Mirror and TSB that aims to celebrate the achievements of “remarkable people who make the world a better place.” The awards are presented during a yearly gala, and nominees are chosen by the public and come from all walks of life, ages, and cultures.

2 comments

  1. Thang Lai Van says:

    My son was born in 21st Apr 18 (just 7 days). He got serious EB disease on the very first day of birth. We do not know how to help him overcome this pain every seconds of his life. Moreover, we live in Vietnam in which the medical system cannot afford to cure him, not enough tools to cover his open wound. Please keep eyes on our state and share the way to take care of him daily. Now he is still in hospital so when we leave, we have to change bandages daily for him by ourselves.
    We are now in deseprate state because we can do nothing to cure him.

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