Selena Yorke loves cheerleading, rollercoasters and even her big brother, she says with a smile and a spirit that is simply contagious.
But it鈥檚 a beautiful smile that hides a terrible truth. The 91原创 Meadows Grade 5 student has an incurable disease.
Last year, Selena was diagnosed with Friedreich鈥檚 Ataxia 鈥� 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鈥檛 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 鈥� 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鈥檙e 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 鈥� it won鈥檛 come near to covering the costs the family will incur.
That鈥檚 where the Yorkes鈥� friends come in. They are putting on 鈥淎 Night for Selena鈥� on April 13 at the Cascades Casino鈥檚 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.
鈥淭here isn鈥檛 a lot we can do physically to help Selena, but as a community we can do this,鈥� said Amber Medeiros of the fundraising evening.
鈥淭he Yorkes are such an amazing family and Selena is such a wonderful girl. Whatever we can do, we will.鈥�
Nickie Schlamp said this horrible diagnosis couldn鈥檛 have happened to a more amazing young girl. The Yorkes have been dealt such a horrible blow, she said.
It was actually Selena鈥檚 Kindergarten teacher who first noticed something was wrong with Selena.
鈥淲hen Selena went to Kindergarten her teacher called us in and said her gross motor skills were off,鈥� said Selena鈥檚 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.
鈥淏ut 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.鈥�
X-rays were recommended. But the X-ray results were fine. The Yorkes were sent to B.C.鈥檚 Children鈥檚 Hospital for blood tests.
鈥淚 was so confident that it was nothing that I didn鈥檛 even have Brad (Selena鈥檚 father) come with me to the appointment,鈥� she said. 鈥淚 knew once the doctor asked Selena and her brother to step out of the room that something was terribly wrong.鈥�
The doctor said she was going to test Selena for the disease and Cari said words can鈥檛 describe that moment.
鈥淣othing can prepare you for it, nothing,鈥� said Cari.
鈥淚 had never heard of Friedreich鈥檚 Ataxia.鈥�
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鈥檚 they could get tickets and they broke the news.
鈥淪he has her emotional days. She hates what she has,鈥� Cari said.
鈥淪he doesn鈥檛 like talking about her disability. She doesn鈥檛 want to feel different.鈥�
Cari spoke to Selena鈥檚 class, explaining to them about what will be going on with Selena.
The school has been very supportive, they said.
鈥淗er friends are there for her. She鈥檚 got good friends.鈥� 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.
鈥淚t helps her deal with it. She has such a huge spirit and is full of energy,鈥� said Brad.
Last summer she broke her foot and because her balance is off, she couldn鈥檛 use crutches and had to use a wheelchair.
That time not walking has already progressed her disease. She can鈥檛 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.
鈥淥ur friends have been amazing,鈥� said Cari and Brad.
鈥淲e don鈥檛 know what we would do without them.鈥�
鈥淵ou can鈥檛 get rid of us now if you tried,鈥� 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鈥檛 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.
鈥淚t鈥檚 another blow,鈥� Cari said.
Organizer鈥檚 of A Night for Selena have been amazed by how generous local businesses have been to offer quality items and prizes.
鈥淚t鈥檚 going to be an amazing night,鈥� said Mederios. If you can鈥檛 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 amber@htpfactor.com, or call Nickie at 604-505-0762 or at rnschlamp@shawa.ca.
