Parents lobby for son’s rare disease
by Denise Ellen Rizzo
Feb 21, 2014 | 5679 views | 0 0 comments | 42 42 recommendations | email to a friend | print
Richard Newton holds his 20-month-old son, Garrett, as he and his wife, Alyssa, talk about the boy’s diagnosis with Angelman syndrome during a fundraiser Monday at Chili’s Grill & Bar.  Glenn Moore/Tracy Press
Richard Newton holds his 20-month-old son, Garrett, as he and his wife, Alyssa, talk about the boy’s diagnosis with Angelman syndrome during a fundraiser Monday at Chili’s Grill & Bar. Glenn Moore/Tracy Press
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Twenty-month-old Garrett Newton sat on the laps of his father, Richard, and then his mother, Alyssa, inside Chili’s Grill & Bar on Monday afternoon. The little boy’s face lit up as he played a brief game of patty-cake with his father.

The Tracy family was at the restaurant at 2030 W. Grant Line Road to raise money for research into a neurogenetic disorder known as Angelman syndrome. It’s a cause that is dear to their hearts, because Garrett was recently found to be one of the babies born with the rare disorder, which is often misdiagnosed as autism or cerebral palsy.

The Newtons started taking Garrett to doctors when he missed key developmental stages at 6 months old, such as sitting up on his own and sleeping through the night, his mother said.

They got their answer Dec. 26.

“It was like a death occurred,” Alyssa Newton said. “We were devastated.”

After Garrett’s diagnosis, she was found to be a carrier for Angelman syndrome.

“All the dreams we had for him changed simultaneously,” Richard Newton said.

Alyssa teaches third grade part time at McKinley Elementary School, and Richard heads the math department at Tracy High School. Now, their goal is to do everything in their power to tell people about Angelman syndrome and support the researchers who are trying to develop a cure.

“What I want people to know is one in 15,000 live births get it,” she said. “We feel it may be the first disease to ever get cured with the proper research and funding.”

Researchers are predicting a cure for the syndrome within five years, according to Alyssa Newton. They’ve already achieved one in clinical testing on mice, she explained, and they hope human testing is just around the corner.

Angelman syndrome is caused by either deletion or mutation of the UBE3A gene on Chromosome 15, Alyssa Newton said. The gene codes for an enzyme in the brain’s learning pathway, ubiquitin protein ligase E3A, and researchers have found ways to turn on the gene, she said.

Richard Newton said those researchers receive $500,000 in federal funding each year, but that’s not enough.

“We need to increase awareness and increase fundraising, so it could happen faster,” he said.

Angelman syndrome causes severe physical and learning disabilities. Most people with the syndrome are unable to speak or have a vocabulary of about 10 words. Seizures are common. The Newtons realize that without a cure, their son will need help around the clock for the rest of his life.

To teach people about the disorder, they have turned to social media, family members and friends. Today, Garrett has his own website, which provides information about Angelman syndrome and links to his Facebook, Twitter and Instagram sites.

“We’ve had five fundraisers so far,” Richard Newton said. “Tracy is really awesome. People we’ve never met before are offering to help fundraise. The community has been amazing.”

The couple has met two other Tracy families who have children older than Garrett with Angelman syndrome, as well as families in the Bay Area with children his age. Richard Newton is also creating websites for three Bay Area families to help spread the word about Angelman syndrome.

“It helps us feel we’re not alone,” Alyssa Newton said.

The fundraiser at Chili’s on Monday, Tuesday and Wednesday included restaurants in Tracy, Manteca, Stockton, Modesto and Livermore and supported the Foundation for Angelman Syndrome Therapeutics.

According to Tracy restaurant manager Chris Cramer, the event raised more than $600 for the foundation — the biggest giveback he has seen in his four years at the Tracy restaurant.

“All three days were huge,” he said Thursday. “This is going to be the biggest donation that I’ve processed. It’s pretty cool, man.”

A check will be processed today with receipts from all five restaurants, Cramer said.

On Monday, Richard Newton said plans for the fundraiser had spread quickly on Facebook and Twitter. He said they hope to make it even bigger next year.

Richard Newton said plans for the fundraiser spread quickly on Facebook and Twitter. He said it was well received, and they hope to make it bigger next year.

Helping spread the word are students at Tracy High, who have formed a Tracy Bulldogs Angelman Syndrome Awareness Club and set up fundraisers at the school, and a Kimball High School student who is raising money in Kimball classrooms.

“The students have been amazing,” Richard Newton said. “They organized events, created an Angelman syndrome club. It’s been amazing and inspiring.”

Garrett has been doing a little better, improving his motor skills and saying “mama” and “dada,” according to his father.

The family will visit a doctor in two weeks for an electroencephalogram that will measure electrical activity in Garrett’s brain, to see if he’s been affected by seizures.

The Newtons are also expecting a baby girl in April. She has already been tested and found to be free of the disorder.

Updates on Garrett’s progress living with Angelman syndrome are posted on the website http://curegarrett.com.

• Contact Denise Ellen Rizzo at 830-4225 or drizzo@tracypress.com.

 
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