Local family raises nearly $1 million for children with disabilities

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By Rosie Cobos

“We thought he was just a fussy baby,” recalls Lynn Van Hollebeke after son Justin Van Hollebeke was born in 1996. That notion — and a family’s reality — was crushed in “just a minute of time,” during a visit with their pediatrician just weeks after Justin was born, said dad Louie Van Hollebeke, a longtime resident of Lake Forest Park.

Carbamoyl phosphate synthetase deficiency is an autosomal recessive metabolic disorder that causes ammonia to accumulate in the blood and often becomes evident in the first few days of life. An infant with this condition may be lacking in energy (lethargic) or unwilling to eat and have a poorly controlled breathing rate or body temperature.

Some babies with this disorder may experience seizures or unusual body movements, developmental delays, or go into a coma. Estimates suggest it affects one out of every 100,000 to 800,000 babies born worldwide.

Justin with sister and mom, Lynn

The Van Hollebeke family was referred to Wonderland Developmental Center, a regional leader in providing early-intervention services for infants and children with developmental disabilities.

At Wonderland a team of occupational therapists worked with both Justin and the entire family. 

The professionals at Wonderland helped the Van Hollebekes in teaching Justin to use a wheelchair and keeping his muscles and joints as loose as possible due to extreme spasticity.

It was through these weekly services that the Van Hollebekes’ met other local families with children with disabilities, which helped them support one another and build lifelong friendships.

Sadly, Justin passed away shortly after his third birthday. 

Determined to pay it forward for the support the Van Hollebekes had received, they created a golf tournament fundraiser in Justin’s memory in support of Wonderland.

That was 19 years, 4,000 golfers, and nearly $1,000,000 ago. The Van Hollebekes recently shared their story with local videographer Camille Adams; readers can find the short and inspiring video on here.

Justin with dad, Louie

During Justin’s time at Wonderland, the agency served an average of 30 kids per month, and the staff numbered less than 10. 

Today, 25 therapists (occupational, physical, and speech language), as well family support specialists work with 239 children and their families per month… and the need is growing. 

King County estimates that demand for the early-intervention services that Wonderland provides will minimally increase by 8% per year. 

“I see the critical importance of early childhood development,” says Dr. Kristi Kiyonaga, a Shoreline-area pediatrician and Wonderland Board Member. “Wonderland offers exceptional, family-centered early-intervention services to my patients.”

Wonderland serves children with a variety of diagnoses: autism spectrum disorder, Down syndrome, cerebral palsy, fetal alcohol syndrome, and general developmental delays among others in south Snohomish and north King counties. This includes the communities of Edmonds, Woodway, Shoreline, Bothell, Kenmore, Mountlake Terrace, Lynnwood, Brier, Everett, Woodinville, Kirkland, Duvall, Seattle, and more.

His big sister loved him

What can you do to help other children and families like the Van Hollebekes? 

The 2018 Justin Van Hollebeke Memorial Golf Tournament is being held on May 12th at top-rated, scenic Newcastle Golf Course, starting at noon.

We still have a few slots open for golfers -- duffers to low handicaps welcome. The emphasis is on fun for a good cause. 

Non-golfers are also welcome to join us for a steak, salmon, or vegetarian dinner while enjoying the sound of bagpipes at sunset and the best view of Puget Sound. 

Click HERE for more information or to register.

“At Wonderland there’s always someone there to help. But at some point, we need people to stand up,” Louie Van Hollebeke says. “This golf tournament is a way for people in the community to give back.”

Do you have questions about a child’s development? The most critical time period for a child’s development is between the ages of birth to three. Babies and young children can’t wait, so give Wonderland a call—we offer no-cost evaluations. Interested in volunteering or donating to our therapeutic programs? Visit their website for more information.