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Dream come true for Badger girl with rare genetic disorder

Trina Eveleigh, her daughter Sydney, and husband Bobby ordered shirts to help children like Sydney with STXBP1 attend a meet-and-greet at Disney. Trina decided to get shirts made for her family and friends to help spread awareness of STXBP1 and it turned into much more than she could ever have imagined – a fundraiser to get Sydney to Disney.
Trina Eveleigh, her daughter Sydney, and husband Bobby ordered shirts to help children like Sydney with STXBP1 attend a meet-and-greet at Disney. Trina decided to get shirts made for her family and friends to help spread awareness of STXBP1 and it turned into much more than she could ever have imagined – a fundraiser to get Sydney to Disney.

Eveleigh family overwhelmed by support

 

BADGER, NL – An awareness campaign by caring parents for their daughter could make dreams come true.

Badger’s Trina and Bobby Eveleigh decided to get shirts made for friends and family to spread awareness of what their daughter, 13-year-old Sydney, goes through every day.
The loving support of her community, family, friends and strangers turned that simple awareness step into a fundraiser for Sydney to go to Disney to meet other children with the same disorder.

“My daughter Sydney was born on Nov. 15, 2003, a healthy beautiful baby. At the age of six months we knew something was terribly wrong. She was not meeting her milestones,” Trina Eveleigh posted on her Facebook page last week.

At the age of one, Sydney had a full body tremor. At two and a half, she took her first steps.
They were sent to the Janeway Children's Hospital and after many years of endless procedures – blood work, testing, neuro studies, muscle biopsy – nothing was found.
At the age of eight Sydney had her first grand mal seizure.

“It took us another year to find her seizures on EEG,” according to Eveleigh’s post.

At the age of 10, Sydney had routine genetic blood work. Three months later it was discovered she had a rare chromosome deletion called STXBP1.

“I grieved for the loss of a child that I will never have,” Eveleigh told the Advertiser. “She will never go to college. She’ll never get married. She’ll never give me grandbabies.
“As a new mom you expect a fairy tale, it’s all going to be ok. But you know what? In cases it’s not ok. I did do the grieving. I did do the blaming. I did go through the five stages of grieving until I hit acceptance. When I hit acceptance, it was like ok, now we need to do whatever we possibly can for Sydney because she’s my baby and I will fight to the end of my life to get her to where she needs to go, to get her the best quality of life I can give her.”

STXBP1 is a genetic disorder. As her mother explained, when Sydney was conceived and her DNA was being made, she was missing just the tip on chromosome 9 – a very important tip.

“She has a severe delay,” Eveleigh said. “She’s 13 but she’s still in the mind of a two-year-old.”

Sydney is non-verbal and has a full body tremor. She can’t control her muscles, which also affects swallowing. She has a seizure disorder and is unaware of dangers, such as hot and cold.

“She needs assistance 24 hours a day,” Eveleigh said. “In every activity she does, she needs supports. She is on the lucky spectrum. She is mobile.”

Rare disorder
There are fewer than 250 children and young adults with STXBP1 in the world. To Eveleigh’s knowledge, there are only seven or eight in Canada, including two in central Newfoundland.

“Sydney’s exact deletion to what she has going on, it makes her even rarer because she makes 13 in the world to have the exact deletion,” Eveleigh said. “She’s very rare.”

Along with STXBP1, Sydney is missing the ENG gene, which Eveleigh said deals with bleeding and the breakdown of her blood vessels. She sometimes has severe nosebleeds, and her mother is on watch for other bleeding, such as from the bowels.

“She has to be checked every few years,” Eveleigh said. “She can have fluid on her brain. She sees a heart specialist every year because she can have fluid laying behind her heart and in her lungs.”

Every year Sydney must go through a complete heart workup. Her parents are hoping soon to be able to do a bubble study on her to confirm whether she has HHT, hereditary hemorrhagic telangiectasia. Sydney also has antibodies in her blood, so if she were to ever need a transfusion it could be very difficult to find her a match

Finding Disney

Another girl living in Lewisporte also has STXBP1.

“Ally was diagnosed because of Sydney,” Eveleigh explained, adding she had a lot of similar traits and after testing, it was determined she also has STXBP1.

Eveleigh became friends with Ally’s mother and they found a Facebook group dedicated to STXBP1, where Eveleigh has connected to people all over the world, and was invited to the Disney World STX Meet and Greet 2018.

On May 15, there will be a day for families, 60 confirmed thus far, from around the world to gather and get to know each other.

“They are paying for the resort for the day,” Eveleigh said. “It’s a once-in-a-lifetime opportunity to meet other kids who are just like her. Disney would be so awesome for me and her to make lifetime friends.”

She said she sees pictures of the children on the STXBP1 Facebook group, and she would love to meet them in person.

“I don’t know them personally,” she said. “I don’t know their story. I don’t know their struggle, I just know mine. And it would be awesome to connect with these people.”

Eveleigh said she debated the trip. She wasn’t sure it was possible to travel with Sydney given her behavior when she is unable to get her way.

“Then Badger come behind me and said, ‘she needs to go,’” Eveleigh said.

Dreams coming true

The organizer of the Disney meet-and-greet is doing a T-shirt fundraiser in the United States to pay for the event. Eveleigh ordered T-shirts for Sydney.

“I thought, we aren’t going but I will support their efforts to try to get other kids there,” Eveleigh said. “On the back of the hoodie it says, ‘you may see me struggle, but you will never see me fall.’ It rings so true to all of these kids – (Sydney) may try 25 times but she will get it. She doesn’t give up.”

Eveleigh decided to get shirts for her friends and family as well.

“I would love to have awareness,” Eveleigh said. “For people to have an understanding of what Sydney is going through every day, her struggle and how strong she really is.

“It kind of got blown out of proportion once I posted it (on Facebook),” she said, adding her first order was sent after just a few days for 56 T-shirts and 48 hoodies.

People were also wondering how to help and donate without purchasing shirts. A GoFundMe page has been set up as well. As of Oct. 23, she had $1,800 raised on the account.

“The amount of support is phenomenal,” Eveleigh said. “The T-shirts were for family. I had no intention of Disney. I really, truly honestly didn’t.”

Other people jumped on board to help as well, even people who do not know the Eveleighs. Bubbles ’n Bows Dog Grooming is doing a fundraiser, and there will also be more T-shirt and hoodie orders. There will be a dart tournament in January.

Look up Trina Eveleigh on Facebook to order, for more information, or visit

https://www.gofundme.com/sydneys-disney-trip to donate.

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