A game night to celebrate Brennan Lewis

Photo credit to Simply Whitney Photo Co.

It brings me great pleasure to introduce you all to the Lewis Family of “All Ohio Hoops” fame in the US.

Mum Denise Lewis has been a member of our EI Support Group for a number of years now, because she is the mother to a superstar son, Brennan who has KRT10 Epidermolytic Ichthyosis (EI) without PPK. Denise has always been such a positive presence within the support group, and she really is the proudest mum of her son.

Brennan is now 18 years old, and has always been an avid basketball enthusiast. He plays for his High-School team, the Shelby Whippets, and has always had to overcome many challenges as a result of his skin in order to continue to play at such a highly competitive level. His determination, and steady support from his friends and family, have allowed the EI community to see that it IS possible to play competitive sports, and we all really love seeing him do what he loves the most.

Photo credit (second from right) to GreatSportsShots.com

Brennan has had many experiences while playing basketball as a result of having EI. On the negative side, he has suffered so many blisters, contact wounds, and skin infections, and over the years, Brennan has encountered some shocking behaviour from other people on the court as a result of his skin. Thankfully, Brennan has found the strength to handle it all with grace and dignity. On the positive side, he has found the type of friendships that only go with playing team sports, and he has learned so much about his own abilities and his great strength to play no matter what.

Photo credit to Simply Whitney Photo Co. (second from left) and Ridenour Photography (black & white and colour shots on court).

This year, the student cheer section at Brennan’s school, called the “Red Rage” approached the Headmaster to ask if it would be possible to hold a game night to show their support for Brennan and his skin condition, to help raise awareness, and to show Brennan just how much he inspired his team mates every day. The Headmaster, Mr Geis was more than willing to pay tribute to Brennans’ achievements. Together, the Shelby Whippets, the Red Rage cheer squad, Denise, and Mr Geis planned the event as a surprise for Brennan, and Denise suggested that they also take the opportunity to raise money for the EI Cure Project of America.

On a Friday night, February 17th, 2024 the students held an Ichthyosis Awareness theme night for Brennan. Everyone was invited to wear Brennan’s favourite colour (Green), and the crowd passed around buckets for people to donate cash if they wanted to. The Whippets fans all showed up in support of Brennan, and they raised a super $725 for the EI Cure Project of America.

Photo credit to Denise Lewis and family

After the event, Denise shared the news with our EI Support Group, and the response was so heartwarming. So many new parents are fearful that their EI babies will grow up being unable to play sports or do usual things. Whilst Brennan is anything but ordinary, and has had to combat a great deal of pain, discomfort, and discrimination during his time playing basketball, he has never let his skin stop him from doing something that he is so passionate about. He is even using this passion for a future career, because he is going off to college to study to be a sportswriter, and already has a great following on Instagram for his sports page “All Ohio Hoops”.

Brennans positive approach to life with EI gives great hope to new parents struggling to come to terms with an EI diagnosis.

I would like to say a great big THANK YOU to Brennan, and Denise, for being a beacon of hope to so many families around the world. Your cheer and determination are always welcome, and we salute you for your strength and kindness.

I would also like to say an extra special thank you to everyone from Red Rage and in the Shelby Whippets community who donated their time and money to our cause that night. Please feel great about yourselves, knowing that you did a good thing, and that your donations are going to research into finding a cure for EI, so that one day, our EI children can just play ball, without having to worry about wounds and infections ever again. Thank you all.