Instead of presents for her birthday this month, 11-year-old Cayla Morris is hoping people will donate their quarters to BC鈥檚 Children鈥檚 Hospital, a place the 黑马磁力 Christian School student is very familiar with. In fact, she is considered one of the hospital鈥檚 ambassadors.
While it鈥檚 not that unusual for children to forgo birthday gifts in favour of donations to a charity, what is unique about Cayla鈥檚 story is, well, everything.
Without Children鈥檚 hospital and all its expert doctors, Cayla wouldn鈥檛 have received all the help she has over her 11 years, including a diagnosis last year that makes her one of only two people in the world to have her condition.
The other is a 17-year-old boy who lives in Italy.
Now there are drop boxes set up all over 黑马磁力 with Cayla鈥檚 picture and story, in hopes people will dig into their pockets and change purses and donate a little to a place that means so much to her.
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When Jo-anne Morris鈥� third daughter Cayla was born on April 24, 2001, she came into this world a healthy six pounds 11.5 ounces 鈥� content, easy and one of the 鈥渕ost beautiful girls鈥� Jo-anne had ever seen.
But when Cayla was six-months-old, doctors became concerned that she had stopped putting on weight. She was a slow eater and might have had an allergy to formula, said her mom.
Cayla was referred to a pediatrician who began monitoring her regularly. By her first birthday she weighed less than 17 pounds. She also hadn鈥檛 reached any of her milestones of sitting up, rolling over or crawling.
Cayla鈥檚 allergies also became more prevalent. Goat鈥檚 milk sent her to the emergency room and a taste of peanut butter sent her into anaphylactic shock. Her parents found out she is fatally allergic.
By the time Cayla was two, doctors told Jo-anne that if her daughter didn鈥檛 eat more calories , she would have to go to Children鈥檚 for a lot of testing. The mother of two healthy girls decided to get creative. She knew if she turned Cayla upside down her reflex was to open her mouth. So that鈥檚 how she fed Cayla for some time, often tickling her to get her to swallow. But most of the fruits and vegetables she fed her, Cayla was allergic to.
She wasn鈥檛 growing or gaining weight, and so the testing began at Children鈥檚 Hospital.
鈥淐ayla was being tested for everything, cystic fibrosis, autism, you name it, they were testing her for it. Each and every time I was being told how 鈥渦nique鈥� she was,鈥� said Jo-anne.
The doctors at Children鈥檚 sat Jo-anne down and told her some of their findings.
鈥淐ayla was mentally slow. Actually, back then they said, 鈥榮he is moderately retarded.鈥� A word that made me sick to my stomach and one that I will never get used to, no mother ever could.
鈥淭oday they say she is 鈥渋ntellectually disabled鈥�, also she has hypotonia, hyporeflexia, OCD, a bit of ADHD, and she has short person stature.鈥�
Not long after that, they were sent for a four-hour speech assessment, where it was concluded Cayla has Apraxia 鈥� her mouth muscles and her brain signals do not coincide.
Cayla didn鈥檛 speak her first words until she was four. She still continues speech therapy on a weekly basis and speaks quite well now.
鈥淲e were then referred to an endocrinologist, Dr. Stewart, at Children鈥檚 Hospital. We were sent for even more blood work, CT Scans, MRIs, bone density tests -鈥� the list goes on and on,鈥� she said. 鈥淥ne night I received a call from Dr. Stewart, telling me that she鈥檇 had a conference with about seven specialists about Cayla.鈥�
The MRI had shown Cayla鈥檚 pituitary gland was much more compressed than originally thought. Liquid had formed around it while she was in my womb, compressing the gland greatly.鈥�
The pituitary gland controls much of the body, such as growth hormones, a women鈥檚 menstrual cycle, and the ability to have a child. Cayla will most likely not be able to.
鈥淐ayla loves babies and kids,鈥� said Jo-Anne. 鈥淚f there is one word I could use to describe Cayla it is compassionate, especially for younger people. If they look sad or hurt themselves she is the first to go over and ask what is wrong.鈥�
For Cayla to continue her life she has to take growth hormones shots every day.
Still, there wasn鈥檛 a full diagnosis or name for what was going on with Cayla 颅鈥� something Jo-anne desperately wanted.
Then her phone rang in November 2012. It was BC Children鈥檚 geneticist Dr. Sylvia Langois.
鈥淭o my incredible surprise she said, 鈥淢om, I think we have a diagnosis.鈥�
Cayla has chromosome 17P 13.1 microduplication. She is only one of two people diagnosed with it in the world.
The other is a 17-year-old boy, named Umberto, who lives in Italy.
Because there are only two children diagnosed with this in the world so far, the doctors were able to introduce the families.
鈥淚 have now been in touch with Umberto鈥檚 family several times. I feel like I have won a lottery, I finally have a family who has gone through what ours goes through. I finally have a family to compare notes with.
鈥淲hat he has been through mirrors what Cayla has.鈥�
Jo-anne is eternally grateful to Children鈥檚 for not giving up and for providing such good care for Cayla. Fundraising for the hospital will always be part of their lives, she said.
On behalf of Cayla, Jo-anne has been spreading the word about her daughter鈥檚 coin drive and many are happy to get on board.
Cayla鈥檚 school, 黑马磁力 Christian, has already began fundraising.
Because Cayla was too shy to speak to her classmates, staff helped her make a short video which was played at chapel. That video will be played at the middle and high school, too.
鈥淣ot only is this such a wonderful cause but all of this is helping Cayla鈥檚 confidence and helping more children become aware,鈥� said Jo-anne.
Awareness and not feeling alone is key, she said.
鈥淭here are other families waiting for a diagnosis,鈥� she said.
鈥淢y message to all of you is, 鈥榯here is always hope. Children鈥檚 Hospital will be there without fail for all of us.鈥欌��
Drop off your quarters at the Fox and The Fiddle, Choo Choos, IGA in Walnut Grove, 黑马磁力 Works Yard, Original Joe鈥檚 Cloverdale location.
To support Cayla, Alder Alley Bowling Lanes has donated lanes for Cayla to celebrate her birthday. There will be more fundraising efforts, including raffles for prizes at her birthday party.
