Rare disease affecting teen’s smile, mom raising money for braces

Posted at 5:36 PM, Aug 01, 2016
and last updated 2016-08-01 22:09:09-04

OSHTEMO TOWNSHIP, Mich. — Thirteen-year-old Madison Suttle said she loves to smile. She has a pretty one too, her mom said. Big and bright. However she stopped smiling when she got her baby teeth removed last year.

Madison suffers from a rare immune disorder called Job’s Syndrome, named after the biblical character who experienced boils on his skin. Madison’s boils grow under her skin, her mom said, among other things.

“They’re born with abnormally small mouths,” said mom Tammy Skaggs about people who battle the disease. “Their baby teeth don’t fall out on their own. So if you don’t find a dentist that is aware of that, their adult teeth will grow in behind their baby teeth and they’ll have two rows of teeth.”

Skaggs said Madison’s been battling the disease since birth and was officially diagnosed when she was 7 years old. It's caused her to break 19 bones in her body and hospitalized her a dozen times with pneumonia. She's been working with a specialist at the National Institute of Health who helps her manage the disease.

“The dentist last year, at NIH, while we were there, pulled her last 12 baby teeth, which were all her jaw teeth,” said Skaggs. “So she has to chew on her front teeth which are spreading her front teeth and messing them up.”

The removal of her teeth left gaps between them Skaggs said. In order to fix them, she needs to get braces the doctors told her. However their on Medicaid and it doesn’t cover orthodontics. So Skaggs created a GoFundMe page, reaching out to the public for help to raise the $6,000 needed to get the braces.

“I feel like if I smile you can tell that not all my teeth are there,” said Madison. “And then people will be like ‘what happened to your teeth?’”

It’s a conversation she said she does not have often. No one’s picked on her at school. But she’s about to enter 8th grade and she wants her classmates to know her condition is not “contagious.”

“If you like brush on me in the hallway, you’re not going to get Job's syndrome. You’re not going to get any other infection from Job Syndrome,” said Madison who also suffers from severe eczema. “I’ve always had it. You just now know that I have it.”

Skaggs said Madison is a caring girl, who’s really excelled at playing the oboe last year. She was told though by a man who suffers from the disease that all the additional orthodontic work may total to $30,000. However getting the braces is a good start, she said, to at least get her daughter smiling again.

“It breaks my heart because I can’t give her what I know she needs to bring back her self confidence and her self esteem,” said Skaggs.  “All I want for her is to be happy."