Each year the Variety Show of Hearts Telethon helps children with special needs in B.C., and presents heart-warming stories of children from across the province.
Here are some magic moments from the 2017 Variety Show of Hearts Telethon:
Destiny
Fifteen-year-old Destiny has Rett Syndrome, a rare neurological disorder which has caused regression and motor deterioration. She is fully dependent, and relies on a wheelchair for her mobility.
In 2007, Variety the Children’s Charity helped Destiny and her family with a wheelchair-converted van. However, the van has recently been in need of some significant repairs. Variety is happy to be able to present Destiny and her mother Tanya with a brand new Sunshine Family Van to help them get to all the places they need to go.
Drake
Drake has Down Syndrome and suffers from poor muscle tone, which has made it difficult for him to walk independently. Variety has given Drake a pair of custom made orthotics, which will help him take his first steps towards a healthy future.
To help with his development, Variety is gifting Drake with a 4-in-1 bicycle that will grow with him. And, as parents know, shoes for kids can get expensive. To help mom Shelley with the cost of supportive footwear for Drake, Variety presented them with a gift certificate to use towards his next pair of New Balance shoes.
Frankie
Frankie is a 20 month old girl with a visual and hearing impairment. She has an underdevelopment of her optic nerves, which has left her with little to no eyesight. She also has microtia of her left ear for which she wears a hearing aid. Frankie presents with weakness in her extremities and resultant delay in her gross motor skills. She is just learning to sit on her own and to roll.
Frankie recently received a walker, thanks to Variety, to support her in learning to walk. Being in an upright position is incredibly important for her to further develop her leg strength, head and trunk control.
Frankie has a complicated condition, and at her age, sensory development is as important as physical development. Variety will be presenting Frankie with a number of specially designed items that will help with her sensory perceptions. BC Playthings will be consulting with Frankie and her family to choose the item that is best suited to her condition.
Johannes
Johannes is a Type A haemophiliac. When Johannes was eight months old he underwent a multi-layer laminectomy where they removed nine vertebrae to extract a large blood clot in his spine. Variety covered the cost of his brace and his family never had to worry about how they would afford it. Variety had also covered the cost of ankle braces, crutches and other associated expenses associated with raising kids and disabilities.
Most recently, Johannes received a new folding wheelchair to take pressure off his ankles, which are the trigger areas for bleeding due to his severe haemophilia. Johannes continues to struggle with haemophilia, and the long, painful daily treatments he undergoes to overcome a severe complication with his condition.
Preparing healthy meals can be a struggle with all of the time required for Johannes’ and sister Parker’s daily treatments. Johannes has mentioned he wants to be a waiter and work in a restaurant when he grows up. Variety will be providing Johannes with a cooking package from WellFed, where the family will cook together, and then have prepared meals that can go in the freezer for at least a month.
Andrei
Seven-year-old Andrei has Type 1 diabetes, and gives himself five insulin injections a day to keep his blood sugar levels under control. When his parents, who have no extended medical coverage, were faced with the unexpected cost of Andrei’s medication, they turned to Variety, who stepped in where health care ended. Variety provided a grant to Andrei’s family to cover their Pharmacare deductible so he could have the medication and diabetic supplies he so desperately needed.
Thanks to donations, Andrei will spend a week at the Canadian Diabetes Association Camp Kakhamela in Gibsons B.C. The camp gives young campers a greater appreciation for the outdoors, and a better understanding of how to manage their own diabetes. The camp will supply all the diabetes supplies Andrei needs, including syringes, pen needles, and testing strips. The staff at the camp provides 24-hour supervision, and focus on camper care and medical procedures for managing Type 1 diabetes.
Oliver
When he was three years old, Oliver was diagnosed with Childhood Apraxia of Speech, a complex motor speech disorder. Oliver required a great deal of therapy, and was receiving both speech therapy (5 days/week) and occupational therapy (three days/week) in Terrace.
In May 2016, Oliver’s mom Leah was diagnosed with ALL (a type of leukemia). Her treatment required her to be in Vancouver for the next 1-2 years, so the family relocated from Terrace. They were initially excited to move to a bigger city centre, thinking it would mean more options for Oliver that weren’t available in Terrace. However, they discovered Oliver’s therapy sessions would no longer be covered as he started kindergarten in September, and was now too old for the province’s Early Intervention Therapy Program. Private speech therapy is very expensive, and with both parents not working to support Leah’s leukemia treatments, the cost of the sessions Oliver needs was not something they can afford. In August, Variety stepped in to cover speech therapy sessions twice a week for the next year for Oliver.
In January, we visited Oliver at school to see how his first year of kindergarten is going, and how his communication skills are progressing. Leah’s treatments are going very well, and the family is hoping to return to Terrace this summer.
Before they go, Variety wanted to give Oliver and his family a chance to enjoy some of best skiing our local mountains have to offer: something Oliver and his dad did together in Terrace before relocating to Vancouver. Our friends at Grouse Mountain are giving Oliver private lessons over Spring Break, as well as lift tickets and rentals for him and Dad Ryan. Mom Leah and younger brother Lincoln will have access to the Chalet while the boys are skiing, as well as passes for ice skating, sleigh rides, hot chocolate, and dining at Grouse Mountain’s Altitude Bistro.
Dacian
Dacian has Duchenne Muscular Dystrophy, or DMD. The condition is progressive and males with DMD rarely live into their 30s. Muscle wasting is a common trait, and boys often lose the ability to walk by the time they’re 12.
Dacian can walk but uses a wheelchair most days to get around because his energy levels deplete quickly. Variety provided funding that allowed the family to get a wheelchair converted van. Because of the help from Variety, Dacian is now able to take his power wheelchair everywhere. It gives him a much-needed sense of independence. For his parents, the wheelchair van made life much easier, for things as simple as going grocery shopping or camping together as a family.
As Dacian is getting older, he is getting more and more dependent on his parents. It is becoming increasing more difficult for his parents to lift him in and out of the bathtub. The family is in desperate need of renovations to adapt the bathroom to Dacian’s specific needs. Team Depot, a charitable division of Home Depot, will be providing all of the labour and materials for a complete bathroom renovation.
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