Family battles with young boy's disorder

Reported by: Alyx Sacks
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Updated: 12/21/2012 10:53 am

We received a viewer email from a grandfather here in town wanting to share his grandson's story and spread awareness about his grandson's rare disease that has now changed the lives of everyone around him.

News 4 sat down with Christy Mathis 2-year-old Ayden's mom.

"Our bond is what made me stay so strong with him you know, because there's no way I was going to let him go through that by himself," Christy says.

Christy says words cannot describe the struggle she's been through in regards to his illness but, her goal is to spread awareness of his disease.

Ayden was diagnosed this year with Hemophagocytic lymphohistiocytosis or better known as HLH.

The blood disorder effects one in 50,000 children.

Some common symptoms of HLH are fever, enlarged spleen, and low blood counts.

Some patients do have central nervous system issues as well like seizures, fatigue, and sudden blindness.

According to the family Ayden did suffer from a brain tumor.

Christy says Ayden does experience seizures and has issues with his eye sight.

But, it all was a long road to Ayden's diagnosis. For the longest time doctors couldn't pin point what was going on.

The confusion lead to a report being filed with Washoe County Department of Social Services.

Christy did sign a release form and News 4 was able to confirm with Alice LeDesma Children's Services Coordinator that due to some concern Ayden was temporarily taken from Christy and placed in foster care.

Ayden was placed with the Hower family.

"I think we are a support for Christy and for Ayden that they probably weren't expecting and wither were we," Wayne Hower says.

While in the Hower's care Ayden made four trips to the hospital.

The families almost lost Ayden. Christy remembers seeing her son on his death bed it was May when he was admitted into the ICU and a bone marrow biopsy gave the family the answers they had been looking for.

Ayden was diagnosed with HLH.

"Some days I'm just happy because he's here, but then there's other days I get really sad, because if I see little boys like Ayden that hurts, but he's here so that's all that matters," Christy says.

Christy did develop a strong relationship with the Hower family ayden stayed with and now they all serve as a support system for him as Ayden continues to fight off the side effects and health conditions caused by HLH.

To help the family and for a way to donate you can got to any Wells Fargo Bank and ask a teller about "Ayden's Fund."

"Ayden's Fund" bank account number is #3186749283.

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