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Local family raises awareness of rare skin disease

Updated: Monday, March 17 2014, 06:51 PM EDT


CADIZ, Ohio -

Hanna Blake was born with a rare skin disease called epidermolysis bullosa (EB), which is a genetic skin condition from missing a protein that holds the skin together, affecting one in 50,000 live births.

EB makes the skin fragile and easily injured; causing painful blisters to form that can become life-threatening if they become infected.

Blake explained children with EB are called “butterfly children” because their skin is as fragile as a butterfly’s wings.

Blake was born with no skin on her feet and right leg; she had to be life flighted to Pittsburgh Children’s Hospital where she was diagnosed.

Blake’s mother, Robin Blake, said it was hard when Hanna was first born because many doctors were unaware of the disease.

“It’s all trial and error; We brought her home when she was 9 days old. We didn’t know what to do. I can remember not knowing and picking up my newborn baby under the arms like you would normally do. After doing it so many times, it eventually made her whole armpit completely raw,” Robin Blake said.

Hannah’s parents make trips to Cincinnati Children’s Hospital every other month for iron infusions and throat dilation. She has also had many hand surgeries due to her fingers webbing.

Most of Hanna’s body has to be wrapped in special bandages from head to toe for protection but she is almost always in pain.

“Well, I mean I’ve been living with it for 14 years so I’m used to it but it’s hard to see everyone play sports and stuff,” Hanna said.

Robin Blake said some children don’t live very long after being born with EB and she thought Hanna would never be able to dance or be a flower girl. Hanna loves dancing and has been dancing for seven years now and she was a flower girl when she was four years old.

Despite Hanna’s skin disease, she is just like every other teenager in the eighth grade. She loves to text message her friends and hang out with her sister and cousins.

Robin Blake said sometimes it’s hard because she can’t take Hanna’s pain away. But she said the more people have become aware of the disease since Hanna was born.

“There’s a lot more awareness but there’s no funding to help find a cure, without money, I mean, what are you going to do?” Robin Blake said.

A good friend decided to help Hanna and others with EB in a special way.

“That’s why my friend is putting on the Butterfly Race in honor of Hanna in September and the proceeds go to DEBRA, the Dystrophic Epidemolysis Bullosa Research Association,” Robin Blake said.

The Blake family and their friends are asking those in the community to support their efforts in raising funds and awareness of EB.

The first annual Butterfly 5K Run/Walk in honor of Hanna Blake will be held on Saturday Sept. 20 at 10 a.m. at Salt Fork State Park. Registration is from 8-9:30 a.m.

To learn more about EB go to www.debra.org.

For more information about the Butterfly 5k visit https://www.facebook.com/pages/Butterfly-5K-RunWalk/702601009770159 and register online at http://debra.kintera.org/Butterfly5k.

Local family raises awareness of rare skin disease

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