Children First: Rare diseases - a family struggles - KOTA Territory News

Children First: Rare diseases - a family struggle

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Rare diseases affect one in ten people in the United States, but 70 percent of those afflicted are children.

Their families face incredible struggles, many falling into medical bankruptcy.

Amber Battista, like most parents, sees her daughter Teia as the light of her life. "She's the most sweetest child ever, heart of gold. Such a momma's girl and I wouldn't trade that for the world," said Battista.

But she's special in more ways than one.

Teia is just one of 20 million children nationwide that has a rare disease. 80% of these diseases are genetic, and very few have a cure.

When she was just three months old she was diagnosed with Prader Willi syndrome. It effects muscle development and causes chronic over eating among other things.

"Teia is very weak, at 3 and a half years old she doesn't walk or have any communication with us," said Battista.

For Teia's family, accepting the long road ahead was initially difficult.

"Through the research we found out it's a lifelong commitment. We don't' know if she'll ever be able to live on her own," said Cleland Battista, Teia's grandfather.

"We go to the doctors all the time. She's constantly going to different specialists, and we go to the children hospital in Sioux Falls every three months," said Amber Battista.

Teia's teachers see firsthand the time, effort and money involved in the care for a child like Teia.

"There's a huge amount of equipment needed- walkers, the right doctors, braces, equipment... I'm sure that's a huge challenge for the family," said Occupational therapist Lisa Gustin.

For Amber, a young mother of four, the future is daunting. Yet, Amber and Teia's teachers find hope in her progress.

"It is a struggle everyday to have a child with special needs not knowing what the future holds," said Battista.

"A lot of parents and family members take for granted the stages a child meets, but with Teia it's a big joy to see her meet those challenges. It's a big blessing to appreciate every little step along the way with Teia," said Physical therapist Cindy Ireland.

According to the children's rare disease network, there are 7,000 diseases that are considered rare. Only 5% of those are treatable.
 
For more resources about Prader Willi and other rare diseases please visit http://www.crdnetwork.org

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