November 28, 2014

Elyria
Cloudy
18°F
test

A Special Wish Foundation gives Hurst family reason to smile

LAGRANGE — As they swung back and forth in bucket seat swings on their brand-new play set, 2-year-old Baen and Bryce Hurst got to experience the pure joy of childhood — something that they haven’t gotten to do all that often in their short lives.

On Monday, the nonprofit organization A Special Wish Foundation erected the play set, which was the wish of the 2-year-old identical twin brothers, who were diagnosed in November 2011 with Hurler syndrome — a form of MPS, or mucopolysaccharidosis.

Hurler syndrome is the result of the body not being able to make an enzyme that breaks down sugar molecules. The Hurst twins are the only documented identical twins on record with the rare disease.

Joe Powers, vice chairman of the local chapter of A Special Wish Foundation, watched and smiled as Baen and Bryce, along with their older brothers, Beau, 8, and Brady, 6, explored the Playground World jungle gym.

“We are happy to be able to do this,” Powers said on behalf of the organization, which grants wishes to children with life-threatening disorders who are under 21 years of age. The local chapter has been helping children from Lorain, Erie and Huron counties since 1988.

Powers said that many families opt to take a vacation to Disney, but that was not feasible for the Hurst family of six.

“It would have been more work than vacation for them,” Powers said.

After careful consideration, it was determined that a backyard playground would benefit the entire family.

Laura Bell, local chapter treasurer of A Special Wish Foundation, said the option to have a playground constructed in the Hurst family background was a smart choice.

“They can use this all the time, instead of just having a memory (of a vacation), and they can all use this,” Bell said as she watched two employees from Playground World put the finishing touches on the equipment.

Reaching a milestone

The construction of the playground nearly coincided with the twins’ one-year anniversary of their life-saving bone marrow transplant.

Earlier in the day, as the playground reached completion, the Hurst family, plus family and friends, ventured into the backyard. The four Hurst brothers sat on the grass, staring in awe as the swings were hung from a wooden beam.

The sight of their youngest sons sitting by their older brothers brought a smile to the faces of Brian and Casey Hurst.

While the bone marrow transplant wasn’t a cure for the disease, it has diminished the progression of Hurler syndrome.

In mid-April, the Hurst family traveled back to the University of Minnesota Amplatz Children’s Hospital for the twins’ one-year post-bone marrow transplant check-up.

“Overall, they are doing well, but now we are dealing with ‘typical’ Hurler’s stuff, not the bone marrow transplant,” Casey said, noting that the next step will be reconstructive surgery on their hips.

The parents also learned that Baen has swollen optic nerves, which most likely are a result of a stroke he had in November 2011.

“The doctors told us we will now start to see the side effects of the stroke, and the brain will compensate for what happened,” Casey said.

Physically, the boys are typical toddlers — they are walking, communicating and very active.

But in other ways, the Hurst twins are very different from their peers because of the disease. They have arched pallets in their mouths, rounding of their lower backs, coarse facial features, low muscle tone, heart conditions, breathing problems, difficulty swallowing, weak voice boxes and wind pipes, and distended abdomens.

Every week, Baen and Bryce undergo physical, occupational and speech therapy in Middleburg Heights. And every other week, they visit a feeding clinic and receive aqua therapy in Shaker Heights.

Bell said she is thrilled that A Special Wish Foundation was able to give the family a source of entertainment to ease the stressful times.

“It’s nice to bring joy to a family at a time when they are dealing with things they weren’t expecting to deal with,” Bell said.

By Monday evening, Brian and Casey sat on their patio, pausing a moment to take it all in.

“The playground lets us all be together, and it also gives Baen and Bryce a sense of what 2-year-olds normally do when they don’t have the medical issues that they have,” Casey said.

Contact Melissa Linebrink at 329-7155 or mlinebrink@chroniclet.com.