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A Mid-Michigan Family Shares Their Experience With Rett Syndrome

October is Rett Syndrome Awareness Month.

According to the International Rett Syndrome Foundation it's a rare disease that affects 1 in every 10,000 girls worldwide, with 160 families in Michigan dealing with it.

An Alma family hopes their story will bring attention to the disease and inspire others to help find a cure.

Siera Rushin isn't supposed to be alive.

"I was told she would not live till she was 10. Siera is now 23-years old," said Siera's Mother, Lisa Rushin, "she's doing a lot better than I anticipated."

An Ann Arbor doctor diagnosed her with Rett Syndrome when she was two and a half years old.

"Rett syndrome is a neural developmental disorder. It's a new mutation of the X chromosome, so that's why it's more common in females,"  said Pediatrician Francisco Lossio.

Doctors say it's easily misdiagnosed. It's a very rare condition and it's sometimes confused with autism.

Taking care of Siera is a 24/7 job.

"She's had almost every symptom you can imagine. She has the heart condition, she has the seizures," said Lisa Rushin.

Someone has to feed her, bathe her and help her use the bathroom.

"The only thing she can do is walk," said Rushin.

To make matters worse, she can't talk.

"You don't truly know how she's feeling. You don't truly know if she's pain-free," said Siera's brother, Cameron Rushin, "I think the hardest thing is...Like when she has surgeries, she's stopped breathing before."

If something does go wrong, the Rushin family is prepared. 

"We all know to go to the freezer. In the freezer, is everything about Siera any doctor is ever need to know. I update them...they go on the top shelf and that's where they're kept all the time," said Lisa Rushin.

It's not an easy life, especially when they go out in public. 

"It's terrible. The ignorance is there. We get stared at. We get comments, I think people try to diagnose her themselves," said Lisa Rushin.

They say it's hard to hold back their emotions.

Through the frustration, the Rushin family says their love for Siera gets them through each day.

They hope sharing their story helps other families get through tough times as well.

"Just to let them know there is a group out there. Get the word out there so it's not so hard when a new girl is diagnosed," said Lisa Rushin.

Siera's brother just graduated from Central Michigan University. He hopes to get into med school and one day find a cure for Rett syndrome.

For more information on the disorder click here.