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Persevering through the pain

One-year-old Emma Patterson and her twin, Gracie, are hooked up to feeding tubes and IVs. - Margo Horner/The Mirror
One-year-old Emma Patterson and her twin, Gracie, are hooked up to feeding tubes and IVs.
— image credit: Margo Horner/The Mirror

By MARGO HORNER, The Mirror

It is not clear who is suffering more, Christy and Ryan Patterson or their 1-year-old twin daughters, Gracie and Emma.

It is painful to watch your children cry and vomit up to 15 times a day. Painful to see their cheeks and eyes drawn in from dehydration. Painful to discover that there’s not much that can be done.

“It’s hard to see them retching. They retch and they cry,” Christy said. “They throw up bile. Brown and green stuff comes out.”

Gracie and Emma suffer from cystinosis, a rare disease characterized by abnormal accumulation of the amino acid cystine in the organs. It causes excessive thirst, dehydration and the inability to keep any food or liquid down without vomiting. People with cystinosis are unable to absorb the necessary minerals and nutrients to survive.

There are 2,000 known cases of cystinosis in the world.

Cystinosis is caused by a dormant gene that both parents pass down. Most parents have no idea they carry the gene.

Without treatment, children with cystinosis are expected to die of end-stage kidney failure by the age of 9.

Christy and Ryan, who is a teacher at Camelot Elementary School in Federal Way, discovered that something was wrong around the twins’ first birthday last July. Gracie was the first to exhibit symptoms. She was vomiting, finicky and excessively thirsty.

“Even a teaspoon of water, she would throw up,” Christy said.

Doctors at first couldn’t figure out what was wrong. They suspected it was behavioral. Or acid reflux.

Within five months, it became clear that it was something much more serious.

“They kind of flat-lined in their growth,” Christy said. “They were sunken in and they looked like little Ethiopian babies.”

After a battery of tests, the Pattersons discovered that their children were suffering from cystinosis. By that time, the children were so ill, they had to be hospitalized almost constantly — a routine of 10 days in the hospital and two days at home.

Ryan and Christy, who is also a teacher, used up nearly all their sick days at work. Teachers at both schools stepped in to donate sick days, gathering nearly 45 days at each school.

A few weeks ago, the twins were allowed to come home from the hospital. They both wear feeding tubes and carry little backpacks on their backs. Their stomachs are covered in tubes.

At night, the twins must be hooked up to IVs to re-hydrate them. They must take a cocktail of medicines every six hours. They usually vomit.

“It’s like a fountain. Something goes in and goes right back out,” Christy said.

The medicines won’t cure the disease, but they will slow it down. The twins can now be expected to survive into adulthood.

“It was really good to hear that there was a treatment for it at least,” Christy said.

Although there isn’t a treatment for weary parents. Ryan and Christy sleep for perhaps four hours each night. With leave from work running out, Ryan may lose his medical insurance. Although the girls are covered under Christy’s insurance, hospital co-pays quickly add up. It is nearly impossible to find childcare.

Both the communities where Christy and Ryan teach have been supportive. The Outback Steakhouse in Federal Way will host a fundraiser for the family March 15. Tickets are sold out.

Contact Margo Horner: mhorner@fedwaymirror.com

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How to help:

Donate to the GracieEmma fund at any Washington Mutual branch. The couple also seeks someone who can provide childcare.

To read about the Patterson family, search for GracieEmma online at http://www.carepages.com

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