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Mucopolysaccharidosis type VI - KOAM TV 7

Mucopolysaccharidosis type VI

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Holden Guilfoyle 2007 Holden Guilfoyle 2007
Wednesday on KOAM Morning News, as part of our continuing series, "Morning Exam," Tawnya Bach talks to Holden Guilfoyle and his mother, Jenny, about his rare condition, mucopolysaccharidosis type VI.

For more information on MPS, visit www.mpssociety.org.

The Guilfoyles will be hosting an MPS awareness event in Fort Scott, Kan. on May 3 from 8 a.m. to 12 p.m. 

Registration for the Holden's Hope Hero Run begins at 8:30 a.m. The race begins at 9:00 a.m. The cost is $20 per person.

Organizers encourage participants to come dressed up as your favorite hero. The first 100 pre-registered participants will receive a cape.

You can preregister here.

More information can be found by searching "Holden's Hope" on Facebook.

WEB EXTRA: Tawnya Bach's 2007 story with the Guilfoyles about Holden's condition

The following story is from February 23, 2007:

A southeast Kansas family is dealing with a rare disease recently discovered in their two-year-old boy.

WEB EXTRA: Tawnya Bach's original 2007 story with Jenny and Tim Guilfoyle

"Recurring ear infections, constant runny noses, pneumonia, respiratory problems," said Jenny Guilfoyle, Holden's mother, about problems he's been experiencing since birth.

But it wasn't until last October on a visit to a spine specialist in Kansas City did his parents truly learn the culprit behind their two-year-old's many illnesses.

"Then I had them write it down what mucopolysaccharidosis was, spell it for me, then I had to call my husband, tell them they thought Holden had this. In my mind,  I thought, whatever it is, we'll fix it," said Jenny.

Just a few days later, on Friday the 13th, Jenny got the call.

"I was on my way to the airport to pick my husband up. I cried. There's always that little bit of denial that you hope maybe they are wrong, maybe it's not him," said Jenny. 

"It scared me to death because I didn't know what was going to happen," said Tim Guilfoyle, Holden's father.

Holden has mucopolysaccharidosis type VI. It's an inherited disorder. Both Jenny and Tim carry the recessive gene.

Basically, with MPS, the body lacks an enzyme needed to break down certain complex carbohydrates.

Without the enzyme, Holden's internal organs were beginning to fail.

The disease is rare - with only 1,100 diagnosed cases worldwide.

"It's the rarest but was the best because it doesn't affect the brain," said Jenny. "He won't be taken away intellectually or developmentally."

There is no cure for MPS, and in the worst cases, left untreated, children rarely make it past 10 years.

The Guilfoyles had two choices - a bone marrow transplant or an enzyme therapy treatment. 

Tim and Jenny chose the treatment and now travel with Holden to Children's Mercy Hospital in Kansas City once a week for a four hour naglazyme infusion.

"Normally, the day of the infusion, he's pretty mellow. He knows where we're going, he's okay with it, and once we get there and get started, he's fine," said Jenny.

"There's not enough research to say how long this is going to help him," said Tim. "It should help him for the rest of his life."

Until a cure is found, Holden will have to continue with the naglazyme treatment for the rest of his life. The drug costs around $800,000 a year.

"In many ways, we felt blessed. It was an answer. He has a chance," said Jenny.
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