LAKE STEVENS — Gregory Lentz loves bubbles.
The 2-year-old waved his hands and reached up to pop them at his home last week during a speech therapy session. When the bubbles settled on the floor he used one of the few words he’s able to speak. “Ba ba ba,” he said, his word for “bubbles.”
“You want more?” his mother, Lisa Lentz, asked, and the bubble gun buzzed into action again.
Gregory was diagnosed with Smith-Lemli-Opitz syndrome, a recessive genetic disorder, when he was 3 months old. People with the syndrome can’t produce enough cholesterol to support normal development, according to the National Center for Biotechnology Information.
Forms of the syndrome vary but the condition is often associated with distinctive facial features, poor muscle tone and a slow growth rate. People with the syndrome can have feeding and communication difficulties, fused second and third toes and problems with their heart, lungs, brain, gastrointestinal tract, limbs, genitalia and kidneys.
Doctors told Lentz and her husband, William, that Gregory has a mild to moderate form of Smith-Lemli-Opitz syndrome. He has a smaller than normal head and fused toes. He has difficulty communicating and is learning how to eat. The family has been told by doctors that his potential to walk and talk is high.
Lentz, a teacher at Lake Stevens Middle School, believes her son is determined and capable of doing both. He has had speech and physical therapy sessions every week for more than a year. During a recent session with speech therapist Susan Sparks of Sherwood Community Services, Gregory was introduced to an iPad.
The boy hadn’t shown interest in many toys during sessions over the past year but responded to different apps, or programs that can be used on the iPad, Sparks said.
“We couldn’t get him to vocalize and immediately he starts interacting with (the iPad),” she said. “He started making all these sounds. It was the first time he’d ever done this.”
Every week, Sparks and Lentz work to get Gregory to mimic a sound, say a word or use or learn a new sign. Now they use the iPad’s camera so Gregory can see himself point at and touch the device. A free app allows Gregory to move pictures of dogs and cats around and records the sounds he makes, often prompting him to repeat the noises.
“He’s not going to buy into anything we ask him to do; we have to find things that he wants to do,” Sparks said. “The key is to find what he wants to do and to make it therapeutic.”
Lentz told her friend, Mindy Haas, about how her son responded to the iPad. Their sons participated in the same swimming class. Haas decided to help the family raise $1,000 to buy their own iPad, and software for the device. A garage sale earlier this month raised $300. Haas is helping to raise more through another garage sale at her home in Everett on Aug. 5 and 6, and at a car wash Sept. 3 at Les Schwab on Evergreen Way inside Claremont Village. She set up a Facebook page to share Gregory’s story.
“It’s hard for (Gregory). You can tell he has something to say,” Haas said. “They’re a sweet family. Everything they can do they’re doing for him.”
When Gregory is feeling overwhelmed or frustrated with communicating or expressing his emotions, he hits his head. Sparks said she’s worked with other nonverbal children who have similar behavioral issues. An iPad will help Gregory’s communication skills grow and be a tool he can continue to learn to use as he gets older, she said.
Gregory also is interested in walking and can walk while holding someone’s hands or while holding onto a set of low parallel bars that his father built for him. He’s part of a feeding group at Sherwood Community Services where he has learned to chew food, and goes to weekly swim lessons and sessions at the Little Gym to help him stay active and engaged with other children.
If the fundraisers raise more than what they need for the iPad and software, Lentz said she’d like to help build up a library of iPads and software for other patients at Sherwood Community Services who can use the device to communicate. Sherwood Community Services in Lake Stevens is a nonprofit that provides services for children and adults with disabilities in Snohomish County.
People who upgrade to newer versions of the iPad or iTouch can help by donating their used devices to Sherwood Community Services, Sparks said.
“What people need to realize when they upgrade their iTouch to a new iTouch or their iPad to a new iPad is what they have in their hands is life changing,” she said. “If they just would be gracious enough to take the time to donate it can have a profound effect on our kids.”
Amy Daybert: 425-339-3491; adaybert@heraldnet.com.
iPad for Gregory
A garage sale to raise money for an iPad for Gregory Lentz is set from 9 a.m. to 4 p.m. Aug. 5 and 6 at 1317 52nd St. SE in Everett. A car wash is planned from 10 a.m. to 3 p.m. Sept. 3 at Les Schwab inside Claremont Village at 4805 Evergreen Way in Everett. Monetary donations also are being accepted at any BECU branch to the Gregory Lentz Benevolent Account.
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