To raise awareness of Angelman Syndrome

Fundraiser set to raise awareness of Trail tot’s genetic disorder

Family and friends of little Fayth have organized a fundraising bake sale Wednesday starting at 10am at Waneta Plaza

Chances are you’ve never heard of the UBE3A gene or Angelman Syndrome (AS).

The Gould family wants to change that following their sweet little girl’s diagnosis.

Fayth Gould is a bubbly Trail toddler who turns three in November. She was born with the chromosomal anomaly, but was only recently determined to be lacking the specific gene which causes AS.

To raise awareness about the condition, her family and friends have organized an all-day bake sale slated for Wednesday, beginning at 10 a.m., in the Waneta Plaza.

Money raised is just icing on the cake, says Fayth’s mom Stacey Gould, adding that all proceeds will go to the Canadian Angelman Syndrome Society.

“We are baking up a storm, and accepting any and all donations,” Stacey added. “Anything will be appreciated. If people want to donate baked goods, canning, or money, they can just drop it off at the mall the morning of the bake sale.”

The syndrome affects about one in 15,000 people, but Fayth is the only known case in the West/East Kootenay.

“To me the awareness of this syndrome is most important,” explained Stacey. “For myself, and just about everyone I have talked to, they had never heard of Angelman Syndrome. Although there is nothing you can do to prevent it from happening, it is something to be aware of. My goal is to spread the word.”

The complex neuro-genetic disorder is rare and often remains hidden until the infant first shows signs of developmental delay at six months. Diagnosis takes several years because unique clinical features, such as severe speech or intellectual impairment, an unusual gait, tremulous limbs and an unusually happy demeanor, may not manifest until the child is one year or older.

That’s exactly what happened before Fayth was diagnosed earlier this year, though maternal intuition told her mom that something was amiss long before.

“I have an older daughter as well,” explained Stacey, mentioning Felicity Gould, 6. “When Fayth was not reaching the same milestones, like sitting unassisted and crawling, it caused red flags to go up.”

Stacey’s pregnancy was textbook, the C-section birth went according to plan, and by all accounts, Fayth was a healthy newborn.

“At six months I started noticing these things,” said Stacey. “I took her to the doctor all the time with my concern, but was always told that kids all develop at their own rate and that they were sure Fayth would catch up.”

The devoted mom persevered along with her husband Barry Gould, because they instinctively knew that something wasn’t right.

She wasn’t “heard” until March 2014, when Stacey described her daughter as “babyish” to Trail’s then-pediatrician Dr. Henry Ukpeh.

“It took some convincing and a lot of pushing with my concerns for things to start rolling,” she said. “I said to Dr. Ukpeh that ‘Fayth seems so babyish,’ and this sent red flags up for him, so he sent us to BC Children’s Hospital in Vancouver.”

For five days Fayth endured a battery of tests. Countless vials of blood were drawn and genetic investigation began, on top of an MRI, a spinal tap, visual screening, and auditory testing.

“Her MRI showed she had microcephaly (a small head) and a decrease in grey matter,” said Stacey. “I was told the results from the genetic testing and blood work could possibly take a few months to come back. So we left the hospital with no real answer as to what was going on.”

Back in Trail, Fayth was her happy self when she began physiotherapy, occupational therapy and speech therapy at Kootenay Family Place in Castlegar.

“During this whole time I remember feeling positive, I kept thinking there was just a glitch and with all the therapies, Fayth would catch up.”

Months passed with no word about the test results. Early this year, Stacey and Dr. Ukpeh planned a letter-writing campaign to get medical documents sent to his Trail clinic.

The agonizing wait gave way to full blown fear in February, when Fayth began to have frequent “drop” seizures (also called atonic seizures, characterized by a brief lapse in muscle tone, caused by temporary alteration in brain function).

“We were flown back down to BC Children’s Hospital, where they did an EEG to determine that she was, in fact, having seizures,” explained Stacey. “It was then the last piece of the puzzle was found (the seizures) and she was diagnosed with Angelman Syndrome.”

The road has been long and ridden with tears and anxiety, but now armed with the answer of what is ailing Fayth, the family can finally move forward.

“I just keep telling myself, it is what it is, there is nothing I could have done to prevent this, and there is nothing I can do to make it go away,” says Stacey. “There is no cure yet, so we carry on with life and do what we can to make sure Fayth has everything she needs to live an enjoyable life.”

She said although doctors gave her and Barry the worst-case scenario, such as Fayth may never walk or talk and will be in their care the rest of her life, she’s already beaten the odds.

“She walks, she communicates through gestures and gets her point across,” Stacey added. “To me she is a typical child who just needs a little extra work. They can do anything as long as you provide them the opportunity to learn.”

Since Fayth’s diagnosis, Stacey has been communicating with other parents of children diagnosed with Angelman Syndrome.

“This one lady said to me, ‘Leave them to be a bump on the log and they will, given them opportunities to succeed and they will.’

“These are words I live by.”

Just Posted

What you see …

If you have a recent photo to share email it to

Storm the Stairs and Trail Kidney Walk this weekend

Grapevine: Events in the Trail area for the week of Sept. 20 to Sept. 26

Kootenay Robusters end 18th paddling season

Women of Trail, Castlegar, Rossland, Christina Lake and Grand Forks came together in 2001

Military exercises may be audible in Trail

The exercises will be conducted in the Trail area from Thursday to Sunday

Council rollover inspires crop of hopeful politicians

Fourteen people vying for six council seats

Watch out for Pavement Patty: Drivers warned outside B.C. elementary school

New survey reveals unsafe school zones during 2018 back-to-school week

Update: Search called off for missing plane between Edmonton and Chilliwack

Search efforts were concentrated along the Highway 5 corridor between Valemount and Kamloops

Why Whistler for ski jumping in 2026? Calgary proposal gets pushback

Calgary 2026 proposes re-using the 2010 ski jumping venue Whistler for that sport and nordic

Despite progress, threat of 232 tariffs dominates NAFTA negotiations

Any deal is seen to require congressional approval before Dec. 1 to survive new Mexican government

VIDEO: Hundreds line highway as family brings home body of B.C. teen

Northern B.C. showed their support by lining Hwy 16 as Jessica Patrick’s body returned to Smithers.

B.C. MP Todd Doherty receives award for saving man who collapsed on a plane

Conservative MP was flying from Vancouver to Prince George, B.C., in June last year

Alleged border jumper from Oregon facing 2 charges after police chase in B.C.

Colin Patrick Wilson charged with dangerous operation of motor vehicle, flight from a peace officer

More than 35 B.C. mayors elected without contest

No other candidates for mayor in the upcoming local election in 22 per cent of B.C. cities

‘Hero’ kid fighting cancer helping with B.C. Children’s Hospital fundraiser

Penticton’s Wills Hodgkinson helping raise funds for B.C. Children’s Hospital

Most Read