Genetic disorder causes tumor growth in young Ahwatukee resident - Ahwatukee Foothills News: News

Genetic disorder causes tumor growth in young Ahwatukee resident

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Posted: Sunday, February 19, 2012 7:00 am | Updated: 2:50 pm, Tue May 15, 2012.

When her children were born, Ahwatukee Foothills resident Jolyn Andrews pictured their lives as normal - baseball games, sleep overs, and family outings. With her first son, Carter, that is what happened. But, roughly five years later, her second son, Joel, was born, and it quickly became apparent that those expectations weren't going to be quite the same.

Joel was diagnosed with Neurofibromatosis Type 1 (NF1), a genetic disorder that results in fibrous tumors to grow on different nerves throughout the body, including on the brain and spinal cord. He had his first surgery when he was just 4 months old.

He may not be playing baseball, but Andrews knows that life doesn't always turn out the way you expect it to.

"I didn't necessarily dream of MRIs and medical facilities when he was born," she said. "It is a whole dynamic that you don't know about."

Early on in the diagnosis, Joel, now 3 years old, had to wear a full-body neck brace. It wasn't until recently that he had a titanium plate installed, which fused three vertebrae in his spine.

Andrews, a single mom who travels frequently for her job, found it difficult to let Joel out of her sight for even a second. He required around-the-clock care.

"The level of care is incredibly high and I won't let just anyone watch him - he needs someone who is experienced in children with special needs," she said.

Andrews found help in an unexpected place. A friend told her about Ryan House, an over-night care facility that is only for children with life-threatening disorders or who need hospice care.

"When we went there the first time, it was a place where I knew he would be well-cared for," she said.

Ryan House is designed to look like someone's home. There is a family room with activities for the patients and their families, as well as a specialized medical staff trained to meet whatever the family's needs may be. When families need a break, their child can stay there for up to 26 days per year, free of charge.

Two additional surgeries later, Joel is walking on his own and experiencing life as a preschool student. He attends Kyrene de la Esperanza Elementary four days a week while his mom is at work. She also gets help from a trained baby sitter.

"He's in a much better place now," Andrews said. "We're in a wait-and-see period. They call (NF1) the snowflake disorder because it's different for every child."

Andrews and Joel are signed up for the 2012 Run for Ryan House on Saturday, March 3. She will be running the 10K, pushing Joel in a stroller.

The Run for Ryan House takes place at DC Ranch, 20901 N. Pima Road in Scottsdale, and is open to the public. There are options for a half-marathon, 5K, 10K, and 1-mile fun run.

To find out more about Ryan House, or to sign up, visit www.RyanHouse.org.

• Contact writer: (480) 898-4903 or troemhild@ahwatukee.com

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