'As Parents We Must Never Give up One Family's Motivation To' Find the Cure for the GNAO1 Mutation
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July 2019 WEST FORT BENDLiving 'As Parents we must never give up One family's motivation to' find the cure for the GNAO1 mutation Illustrations from PLUSaround Fort Bend A publication of the The American Association of Orthodontists recommends that most children have an orthodontic screening By Age 7 SCHEDULE A COMPLIMENTARY EXAM 3 Ways We Save Smiles Guide erupting teeth into a more favorable position. Preserve space for permanent teeth. Reduce the likelihood of fracturing protruded front teeth. www.lonestarbraces.com SUGAR LAND OFFICE ROSENBERG OFFICE 4645 Sweetwater Blvd, Ste 100 24004 Southwest Freeway, Ste 502 Sugar Land, TX 77479 Rosenberg, TX 77471 (281) 980-3900 (832) 586-9500 The American Association of Orthodontists recommends that most children have an orthodontic screening By Age 7 SCHEDULE A COMPLIMENTARY EXAM 3 Ways We Save Smiles Guide erupting teeth into a more favorable position. Preserve space for permanent teeth. 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Exp. 00/00/10.. www.lonestarbraces.com FIREHOUSE SUBS - BRAZOS TOWN CENTER FIREHOUSE SUBS - FIRST COLONY 23511 Brazos Town Crossing 3135 Highway 6S SUGAR LAND OFFICE ROSENBERG OFFICE Rosenberg, TX 77471 Sugar Land, TX 77478 4645 Sweetwater Blvd, Ste 100 24004 Southwest Freeway, Ste 502 832-471-6459 281-980-7827 Sugar Land, TX 77479 Rosenberg, TX 77471 (281) 980-3900 (832) 586-9500 WWW.FIREHOUSESUBS.COM FEATURE STORY Shelley van Deursen shares the journey of her daughter’s West Fort Bend diagnosis of a rare disorder and Contents the how her family is trying to Living™ Cover photo by Kelly Anne Barron Photography GENERAL MANAGER Lee Hartman find a cure. &Staff [email protected] JULY 2019 ASSISTANT MANAGING EDITOR PAGE 6 Marquita Griffin [email protected] ADVERTISING John Oliver [email protected] NINA STRUTHERS Stefanie Bartlett Richmond artist Nina Struthers continues [email protected] to showcase her illustrations inspired by Ruby Polichino [email protected] local architect and history. 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West Fort Bend Monthly has 30,000 print circulation and is a sister publication of Fulshear Living Monthly, Greatwood Monthly, Pecan Grove Monthly and is a Publication of the Fort Bend Herald. Our publishing headquarters is 1902 S. Fourth Street, Rosenberg Texas 77471 18 June 2019 Arts & Entertainment WEST A Moon Landing 50th Anniversary Festival and FORT BENDLiving Inspiration Stage presents Mamma Mia! Faith Parle says singing onstage 'is the best feeling in the world' Summer Fun 24 in Fort Bend Introducing Troop Scholastic Spotlight PLUS100 for Girls Needville students plan trip to Rome. Like us on Facebook @fortbendherald 34 A publication of the Health New 3D technology helps doctors identify early-stage lung Tell us how we’re doing! tumors. Email: [email protected] 4 • West Fort Bend Living Come see the New 2019 Ford Explorer. 2019 Expedition 2019 Edge 281-240-3673 12220 Southwest Frwy. Stafford, TX Outbound Feeder - Exit Wilcrest Dr. 2019 F-250 King Ranch 2019 EcoSport 2019 Mustang 2019 Escape Come See the New 2019 Ford F-150 King Ranch. Photo courtesy of Kelly Anne Barron Photography | Annabelle van Deursen with her little brother James. “From day one she has been so lovable and patient with him. They are best friends, two peas in a pod. Annabelle has made tremendous progress since James has been born, a little sibling rivalry has been the best thing for her,” said their mother Shelley with a smile. “They play so well together, I’m so thankful for their relationship.” Feature AAmazing daughter’s rare disorder Annabelle sparks the search for a cure by MARQUITA GRIFFIN | [email protected] t took a year for Daniel and Shelley van Deursen to receive (chorea), involuntary movements of the face and tongue the answer to the question that had been gnawing at their (dyskinesia) and poor muscle tone (hyptonia). minds. The couple wondered if there was a developmental To date there is no cure. delay they were witnessing because, at six months old, their “Through research and more children being diagnosed, we are Idaughter Annabelle wasn’t sitting up on her own. finding out that GNAO1 is a little trickier than just a simple “I felt she was a little behind [but] I was told a lot that I was a diagnosis,” Shelley said. “Within the diagnosis there are different first-time mom and every child develops differently, which I variants, and each child seems to be different, even if they have understand to a point,” said Shelley. “This continued and she still the same variant.” wasn’t able to sit up on her own at nine months which resulted The disorder has caused Annabelle to have developmental in us having a consult with neurology.” delays and dystonia, which is a movement disorder. Still the answer wasn’t immediately revealed. It remained “She doesn’t walk or talk, although she is completely obscured, while every conceivable concern and worry plagued cognitively appropriate for her age,” Shelley said, noting that the Shelley and her husband. disorder “seems to affect these children on a cellular level in the “Every single test we were doing, almost monthly, was coming brain.” back negative,” she said. “As she got older, I started to really see Considering her and her husband’s experience, Shelley offers how behind she was than other kids her age. She never regressed, advice to others parents who may be concerned with what their but very slowly made progress. So slowly that I knew it was child is, or isn’t, doing: “Follow your instinct more than anything, something serious.” and push for tests to be done for your child.” After weekly physical therapy, scores of tests, consults with a “There may not always be an answer,” she continued. “We were neurologist every three months, and fighting with insurance over warned her results might come up as not diagnosed. There are a a Trio WES, Annabelle, who is now 3 years old, was diagnosed lot of disorders that have not been found yet, but as parents we with a GNAO1 mutation, a rare neurological disorder that can must never give up on helping our children live their best lives cause, among other symptoms, developmental delays, abnormal with the support or resources they need.” movements, early infantile seizures, irregular muscle contractions 6 • West Fort Bend Living " The van Duersen family at Annabelle’s Amazing Graces benefit held in April. Proceeds from the event were donated to research for a cure to GNAO1 mutation. “We pray and believe that with God and modern medicine, we will have a cure for GNAO1 one day,” Shelley said. A FLOURISHING FAITH gave us limitations for her life and things she would never do; she The day the phone call came providing Annabelle’s diagnosis, has done more than they ever said she would and I truly believe the van Deursens were shattered. in miracles and that God is bigger than medicine.” “The only question I had was life expectancy,” remembered During the journey of Annabelle’s diagnosis and therapy, the Shelley, who was pregnant with her second child, James, at the van Deursens founded, and run, a 501c3 nonprofit called time. Annabelle’s Amazing Graces. But the doctors couldn’t answer Shelley because they didn’t “After I was able to grasp Annabelle’s diagnosis and the fact know, so the hysteria flowed out, right along with Shelley’s tears. that there is no cure, I decided to do something about changing Still, the van Deursens didn’t abandon hope. Shelley said she and that and helping to find a cure,” Shelley said of the inspiration Daniel already had a solid Catholic faith foundation, but following behind Annabelle’s Amazing Graces. “I am not able to actually do Annabelle’s diagnosis, their “faith in God increased abundantly.” the research and find the cure for her, it’s too complicated for me, “The most important lesson we have learned is to turn to God but what I can do is raise money to give to the research being with everything,” Shelley said. “He will never leave you. We done and help in that way.” wouldn’t be able to get through such a hard time without God Following conversations with a friend, Shelley decided to host and God’s help daily.” an annual benefit through Annabelle’s Amazing Graces to fund The van Deursens have also learned not “to not sweat the small research for the cure for the GNAO1 mutation.