Selena Yorke loves cheerleading, rollercoasters and even her big brother, she says with a smile and a spirit that is simply contagious.
But it’s a beautiful smile that hides a terrible truth. The Langley Meadows Grade 5 student has an incurable disease.
Last year, Selena was diagnosed with Friedreich’s Ataxia — a progressive disease that affects every cell in her body.
It will not affect how Selena thinks but will affect her ability to walk and talk. Eventually, Selena won’t be able to dance to her favourite songs, or even sing them.
The rare and viscious disease, which causes progressive damage to the nervous system and to the heart, will eventually deprive Selena of everything. There is no cure.
Already, she has the beginnings of hypertrophic cardiomyopathy — the wall of her heart has begun to thicken.
Last year, she went to Disneyland for a day with the Sunshine Dream for Kids program where they get buddied up with a California Sheriff and a volunteer from here.
They’re able to jump the lines and go on rides all day and night. The kids, all of whom have life-threatening illnesses, brave the trip without their parents.
Selena had a great time, she said. Her favourite ride was the Haunted Mansion.
But as things become tougher for Selena, her parents are going to need to do some expensive renovations to their home including a stairlift, which can cost upwards of $11,000.
Bathroom renovations are $30,000 and a vehicle with a wheelchair lift can cost $40,000 used and as much as $60,000 new.
While there are some grant forms to fill out for coverage — it won’t come near to covering the costs the family will incur.
That’s where the Yorkes’ friends come in. They are putting on “A Night for Selena” on April 13 at the Cascades Casino’s Summit Theatre. With a seating capacity of 250, they are hoping to fill it.
They are gathering tons of door prizes and raffle wins and local band, HTP Factor, will be rocking the place.
“There isn’t a lot we can do physically to help Selena, but as a community we can do this,” said Amber Medeiros of the fundraising evening.
“The Yorkes are such an amazing family and Selena is such a wonderful girl. Whatever we can do, we will.”
Nickie Schlamp said this horrible diagnosis couldn’t have happened to a more amazing young girl. The Yorkes have been dealt such a horrible blow, she said.
It was actually Selena’s Kindergarten teacher who first noticed something was wrong with Selena.
“When Selena went to Kindergarten her teacher called us in and said her gross motor skills were off,” said Selena’s mom, Cari.
They took her to her family doctor and she had some physical tests done. Swimming and gymnastics were recommended with the idea her motor skills would catch up to other kids her age.
“But last year, it was getting worse. I took her to my physiotherapist, just because I happened to be there anyways. Selena had a huge range of motion in her hips.”
X-rays were recommended. But the X-ray results were fine. The Yorkes were sent to B.C.’s Children’s Hospital for blood tests.
“I was so confident that it was nothing that I didn’t even have Brad (Selena’s father) come with me to the appointment,” she said. “I knew once the doctor asked Selena and her brother to step out of the room that something was terribly wrong.”
The doctor said she was going to test Selena for the disease and Cari said words can’t describe that moment.
“Nothing can prepare you for it, nothing,” said Cari.
“I had never heard of Friedreich’s Ataxia.”
There are only nine people in B.C. who have it and around 15,000 worldwide.
The Yorkes said breaking it to Selena and her brother was the most difficult thing they have ever done.
Cari and Brad wanted to soften the blow somehow so they scrambled to find tickets to the upcoming Justin Bieber concert for Selena.
It was sold out. But through a friend of Brad’s they could get tickets and they broke the news.
“She has her emotional days. She hates what she has,” Cari said.
“She doesn’t like talking about her disability. She doesn’t want to feel different.”
Cari spoke to Selena’s class, explaining to them about what will be going on with Selena.
The school has been very supportive, they said.
“Her friends are there for her. She’s got good friends.” She has daily physiotherapy at school and is doing therapy horse riding and some swimming.
Brad said through all this, it helps that Selena is such an outgoing girl.
“It helps her deal with it. She has such a huge spirit and is full of energy,” said Brad.
Last summer she broke her foot and because her balance is off, she couldn’t use crutches and had to use a wheelchair.
That time not walking has already progressed her disease. She can’t cheerlead anymore.
The Yorkes have the support of an online group of parents and caregivers going through this, which helps. They also thank a solid group of friends, many of them are new ones through the school PAC.
“Our friends have been amazing,” said Cari and Brad.
“We don’t know what we would do without them.”
“You can’t get rid of us now if you tried,” said Schlamp.
The one medication Selena had just begun to try, which is a powerful anti-oxidant supplement at a cost to them of $6,000 per month, was pulled off the shelves in Canada two weeks ago.
They are now scrambling to find out what to do. Selena wasn’t on the medication long enough for them to know if it was making a difference or not. But they wanted to at least have the opportunity to try it.
“It’s another blow,” Cari said.
Organizer’s of A Night for Selena have been amazed by how generous local businesses have been to offer quality items and prizes.
“It’s going to be an amazing night,” said Mederios. If you can’t make the evening, you can still donate. Donations can be made at any TD bank, using account #9194-5241677 with cheques payable to: A Night For Selena.
Tickets are $20 per person and include a complimentary beer or house wine.
They can be purchased through Amber at 604-533-2261 or email@example.com, or call Nickie at 604-505-0762 or at firstname.lastname@example.org.