Cypress mom launches research foundation seeking treatment for son's rare condition

Monica Weldon (right) founded  Bridge the Gap SYNGAP Education & Research Foundation. Her twins Beckett (middle) and Pyper are 9 years old.

Monica Weldon (right) founded Bridge the Gap SYNGAP Education & Research Foundation. Her twins Beckett (middle) and Pyper are 9 years old.

Monica Weldon first noticed something was wrong with her son Beckett when he was 4 months old and his development was far behind his twin sister’s. Beckett had seen 19 clinicians and three neurologists by the time he was the first Texas Children’s Hospital patient diagnosed with a rare neurological disorder at age 4.

Beckett has a mutation in the SYNGAP1 gene, a critical protein for brain development. The mutation—discovered in humans in 2009—results in mild to severe intellectual disability and has been linked to autism and epilepsy.

At the time of Beckett’s diagnosis, Weldon said there was only one paper published on the disorder. Through blogging and creating a Facebook page, she found an outlet to share her experiences and connect with other families going through the same challenges.

“When Beckett was diagnosed, no one could tell me the prognosis, the lifespan—really anything,” she said.

After a 23-year career as a teacher, Weldon left her job to start Bridge the Gap as a nonprofit to raise awareness and funding for research. When it launched in 2014, the group worked with 24 patients from around the world. Today, there are more than 250.

Because the gene mutation is a spectrum disorder, symptoms play out differently in each patient, Weldon said. Common signs include sensory and behavioral issues, speech delay, intellectual disability, epilepsy and autism spectrums, global developmental delay and low muscle tone.

“As time went on, we realized how big this gene actually was,” she said. “Now, it looks like it’s going to be overlapping into other disorders.”

Seven international labs are researching the SYNGAP1 mutation with help from Weldon’s team, which helps connect researchers to patients in addition to securing funding. Scientists have discovered it is one of the genes responsible for brain plasticity, and research could ultimately help patients of Parkinson’s disease, Huntington’s disease, Alzheimer’s disease and dementia, she said.

Part of her job description as president and CEO of Bridge the Gap includes traveling to advocate to state and federal entities on behalf of rare disease patients. Over the last six months, Weldon said she has helped secure $7.5 million in research grants.

In mid-November, several Bridge the Gap families met at Johns Hopkins Hospital in Baltimore. The families got the chance to share their experiences with physicians who were looking to collect data to support their research.

Weldon said despite the challenges that come with her son’s condition, his quality of life has greatly improved since she launched Bridge the Gap.

“I used to not even be able to bring [Beckett] into a public place,” Weldon said. “We couldn’t sit down at a restaurant as a family; we couldn’t go to church.”

Now 9 years old, Beckett takes about seven different medications to support his immune system, control his seizures and improve sensory issues. Weldon said when physicians first caught his seizures, he had about 30 words in his vocabulary, and today he has more than 500.

“He’s always going to depend on someone,” she said. “He’s 9 years old, and cognitively he’s about 3 or 4. But he is progressing, and as long as he’s not regressing, we’re doing something right.”
SHARE THIS STORY
By Danica Smithwick

Danica joined Community Impact Newspaper in May 2016 after graduating with a journalism degree from Union University in Jackson, Tennessee. She covers public education, local government, business, demographic trends, real estate development, nonprofits and more in the Cy-Fair community.


MOST RECENT

The business will offer different cuts of fresh meat, fresh seasonal produce and other specialty products from Hispanic countries. (Courtesy Don Tomate Meat Market)
Don Tomate Meat Market opening soon in Cypress

The business will offer different cuts of fresh meat, fresh seasonal produce and other specialty products from Hispanic countries.

cbd american shaman eye dropper
CBD American Shaman now open at Hwy. 249, Louetta Road

The retailer sells CBD, or cannabidiol, products, such as oils, topicals, edibles, gummies, teas, infused water and capsules.

Texas Central claims the $12 billion construction process would be privately funded, and the train would transport 6 million annual riders by 2029. (Courtesy Texas Central Partners/Community Impact Newspaper)
High-speed rail could break ground in 2020; opposition has doubts

Texas Central claims the $12 billion construction process would be privately funded, and the train would transport 6 million annual riders by 2029.

The Texas Department of Transportation has announced several lane closures planned along Hwy. 290 this weekend. (Courtesy Adobe Stock)
25 Hwy. 290 lane closures affecting Cy-Fair drivers this weekend, Jan. 17-19

The Texas Department of Transportation has announced the following lane closures planned along Hwy. 290 this weekend.

Southern Divas Boutique has locations in Cypress and in Katy.
Southern Divas Boutique to close Cypress location in late January

Most store items will be included in a 50% off sale through Jan. 31.

The Cy-Fair ISD Dance Showoffs take place on Jan. 23. (Courtesy Cy-Fair ISD)
20 things to do in and around Cy-Fair in January and February

Events range from live music to a dance showcase to a fundraiser honoring veterans.

Raveneaux Country Club was one of hundreds of properties that flooded during Hurricane Harvey in 2017. (Courtesy Harris County Flood Control District)
Cagle: Goal of Raveneaux acquisition is not to put an ‘ugly hole in the ground’

“The goal is to create something more along the lines of Kickerillo [Mischer Preserve] with beautiful park amenities—little fishing piers, boat launches and walking trails that go around it,” Cagle said.

A Metropolitan Transit Authority of Harris County study on eliminating ride fares left both METRO board members and officials seemingly unconvinced of the likelihood of implementing it in Harris County. (Kelly Schafler/Community Impact Newspaper)
METRO board of directors say free fare 'not feasible' for transit authority

A METRO study on eliminating ride fares left board members and officials unconvinced of the likelihood of implementing it in Harris County.

A proposed road project in Cypress involves extending Greenhouse Road under Union Pacific Corp. railroad tracks and Hwy. 290 to connect with Skinner Road.
Project connecting Greenhouse, Skinner roads moves forward

The project was added to a four-year transportation improvement plan adopted by the Houston-Galveston Area Council in March.

Gander Mountain closed its Cy-Fair location in 2017. (Courtesy Colliers International)
Preliminary plans announced for former Gander Mountain site at Hwy. 290, FM 1960

The facility will feature a two-story go kart track, bowling, virtual reality games, arcade games, axe throwing, event rooms, upscale dining and multiple bars.

(Jen Para/Community Impact Newspaper)
Houston Livestock Show and Rodeo concert tickets go on sale Jan. 16

Lower-level seating options are already very limited.

Texas oil and gas industry could see a major slowdown in 2020

The oil and natural gas industry paid a record-setting $16.3 billion in taxes and royalties to local governments and the state in 2019, the Texas Oil and Gas Association announced Tuesday.

Back to top