Local families with rare condition respond to Shaq's Instagram p - KPLC 7 News, Lake Charles, Louisiana

Local families with rare condition respond to Shaq's Instagram photo

LAKE CHARLES, LA (KPLC) -

You would think they were old friends, but Randi Walker and Kerri Fisher only met recently. The two share a lot in common though. Their sons were all born with ectodermal dysplasia -- a rare condition that makes it hard for them to grow hair, teeth and nails. The boys are also not able to sweat.

"Because it's so hot here and just walking from the grocery store to the car -- these little guys can get overheated that quickly, then for them to get into a hot car makes it even harder," said Walker.

Walker's oldest son, Weston, 7, was diagnosed at two years old.

"He only had a little bit of hair on his head. No body hair, no eyelashes, no eyebrows, very wrinkly under his eyes," said Walker.

Her second son, Finley, 2, also has ED.

Fisher adopted her son Ford and said he was also diagnosed early.

"Our doctor noticed and brought in a specialist and diagnosed him at like 13 months old. I did lots of crying," said Fisher.

Ford, who is now 11, seems to be the exception. Though coarse, he has lots of hair. However, unlike Weston, who has worn dentures since he was two years old, Ford has not had success and rarely smiles in public.

"It's the bullying. The picking and the bullying and not being the norm like she said. He's never going to be the norm and he has his first set of dentures and they don't fit," said Fisher. "I remember his principal at the time telling me -- she would always see him in the hallway at school and wondered why he didn't smile ... it's because he doesn't have teeth. It broke her heart."

The bullying doesn't stop there. Both mothers were hurt by the recent Instagram picture posted by Shaquille O'Neal mocking a fan's selfie. The man has ED. Even though Shaq apologized -- they say it's too little too late. 

"It makes me sick to my stomach. It was just simply because of who it was and the way he went about it. My oldest son was always a big fan and for him to do that... as a celebrity you would think he would know better," said Fisher.

"It was pretty disappointing. Shame on you," said Walker.

The women have connected with the National Foundation for Ectodermal Dysplasia. Attending national conferences, they've met other families and have been able to share stories and get answers to questions.

"No one looked at us any different. They just smiled and they wanted to know our name and where we were from and they wanted to be friends immediately," said a tearful Walker.

"When you go to these events they pair you with a person. We were paired with a guy named Lee. He is a personal trainer with ED and just had a child. So seeing him, it made me think my child can grow up and do whatever he wants," said Fisher. 

Each family has created a new normal. 

"When Weston was first diagnosed and the thoughts that we will never be able to play ball. We'll never be able to go out on the lake again. We'll never be able to do any of this, but that has proven to be the farthest thing from the truth," said Walker. "We do go boating. We just have to know our limits and keep the boys cool with water. Weston plays ball and knows his limits. He knows when he is getting overheated. We have adjusted."

Ford also plays tournament ball. He too knows his limits and does his best to stay hydrated when on the field.

"I do not want him to miss out on every thing every other kid gets to do," said Fisher.

The condition is not covered by insurance because it's considered cosmetic. It can be very costly when it comes to getting dentures and permanent teeth.

June is ectodermal dysplasia month. For more information click here. 

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