Variety, the Children’s Charity of Manitoba knows first-hand how the holiday season can be an incredibly stressful time of year for families in Manitoba who have a child living with special needs.
Variety’s Holiday Wishbook lets you decide and see how your donation supports children who need it most. Read the real stories of children in need and make your donation today whether its CARE (life-saving medical equipment and services), FREEDOM (life-changing equipment and services for mobility and inclusion) or FUTURE (life-enriching communication equipment, services and education.
We thank you for your support and for wanting to help Variety make a difference this holiday season.
Approximately, 32% of Canadians have no dental coverage and must pay directly out of pocket or through government subsidized programs in order to receive care. Children experiencing oral health problems are at risk of sleep loss, poor growth, behavioral problems and poor learning. For the past 13 years Variety’s Children’s Dental Outreach Program has provided preventative education, dental screenings and free treatment to children who families find themselves in situations of economic disadvantage. Families are often faced with tough decision, like whether to cover the cost of food, clothing, shelter or their child’s dental-related care.
Jordan is a very active 11 year old boy living with ADHD and Autism. Jordan also wears glasses so he can read and write at school and actively participate in all activities. Jordan’s family currently relies on employment and income assistance for support in raising their children. Employment and income assistance covers the cost of new eyeglasses every 3 years for families who may not be able to afford them. Jordan received a new pair of eyeglasses, with a new prescription in 2017 but unfortunately his eyeglasses became broken in the summer of 2018; Jordan tends to be hard on them. Jordan wears his eyeglasses at all waking moments to be able to see properly and without his eyeglasses he would surely struggle daily. His family asked for Variety’s support in funding a new pair of eyeglasses and we were happy to cover the cost.
Born in Qatar, Alexis was admitted to the hospital at 7 weeks old with bronchiolitis. By 3 months she had a hernia repair and at just 7 months old, the family moved to Flin Flon Manitoba. Just over a year ago, Alexis presented with seizures and was transported to the Children’s hospital in Winnipeg where an MRI and EEG helped diagnosis Alexis with multiple issues including Cerebral Palsy. In 2016, Alexis had a GT Tube insertion because she had been struggling to meet normal weight and motor skill milestones. Prior to Variety’s support, Alexis was fed 6 times a day using a large gravity system feeding pump that was difficult to use outside of the family’s home. Due to Alexis’s medical issues, her and her mom travelled often from Flin Flon to Winnipeg to attend appointments and the large feeding pump was becoming more and more difficult for mom to use and manage. Variety was thrilled to approve the family’s request for a Kangaroo Joey feeding pump and backpack that was a quarter of the size of the previous pump. The pump is carried in the special backpack so Alexis can feed away from home more conveniently. Alexis’s mom, Mary Ann recently let Variety know how happy she is to have received the pump saying “I cannot believe how much easier it is to use”. Now, Mary Ann and Alexis can travel to Winnipeg for medical appointments, join playgroups and just leave the apartment with ease. Plus the new feeding pump will ensure Alexis is getting the nutrition she needs and can continue to catch-up in her development.
Creighton is a sweet and cheerful 4 year old boy with a diagnosis of Hypoxic Ischemic Encephalopathy following cardiac arrest at 12 months of age which lead to spasticity and developmental delays. Despite this, Creighton has progressed in many areas of his development and his family has ensured that he continues to participate in all their families’ engagement and activities. Creighton loves using different pieces of equipment, exploring switch-access toys, swimming and attending his sibling’s soccer games! During past summers, in order to attend community outings or watch his siblings play soccer, Creighton was placed in a bath seat. This put Creighton at a low height (on the ground), away from his family and did not allow him the ability to interact easily with his loved ones or his environment. Prior to this summer starting, Creighton’s family reached out to Variety in hopes of securing funding for a much better suited, but more expensive, piece of equipment, a Chill-Out Chair. Creighton’s new Chill-Out Chair not only makes community outings better but allows Creighton’s muscle tone to decrease and his muscles to relax, so that he can easily watch his sibling’s soccer game or spend time at home safely, without being strapped into an upright position. The Chill-Out Chair is also waterproof and comes with all-terrain wheels so Creighton can participate in fun outdoor activities and even head to the beach with his family. Variety was so excited to get some photos of Creighton spending time outdoors and cheering on his siblings in his new chair!
Alex is a 7 year old boy living with hearing loss. When Alex was 2, he was diagnosed with a brain tumor; as a result of chemotherapy, Alex’s hearing was impacted. Alex wears behind-the-ear-style hearing aids for all waking hours, which have a few basic parts:
When you’re young, your ears are constantly growing and changing! In order for Alex’s hearing aids to work properly, he needs new ear molds about every 5-6 months. This becomes quite costly for families. Variety’s Special Needs Program helps Alex hear by covering the cost of replacement ear molds.
“My son’s hearing aids have made such a huge impact on his development and communication skills. Thanks to properly fitting ear molds, he is able to have conversations and learn to express himself which has helped develop his overall skills and catch up to other kids his age quicker.” – Rebecca
Brody is a sweet and cheerful 2 year old boy whose smile lights up any room. Brody happens to be living with Cerebral Palsy, visual impairment, seizure disorder and global developmental delay and is completely dependent on his family for feeding, mobility and advocacy.
Despite this, Brody is very active and thrives on sensory input through movement. Brody gets frustrated when he is placed on someone’s lap because he just wants to move! His physiotherapist suggested a modified bike to help him gain the independence he seeks.
After receiving a quote on the cost of an adaptive bike, Brody’s family realized they would not be able to purchase this piece of equipment on their own. They reached out to Variety in hopes of securing funding and making Brody’s dream of riding a bike, a reality.
For Brody an adaptive bike means he can enjoy the success of riding a bike that is supportive to his needs and keeps him safe. A bike is an important form of physical activity that promotes bone and muscle health, cardiovascular health and has positive effects on circulation, social involvement and overall quality of life. With his new adaptive bike, Brody can spend time with his family and friends outdoors, while improving his range of motion, strength and coordination.
With funding through Variety’s Freedom Program, Brody now has the FREEDOM to move on his own which instantly delights him! He uses his bike to be beside his family when they go on walks, at the lake and even at his daycare gymnasium.
Skyenne is a 14 year old girl attending her first year of high school. Although she is severely limited in verbal, fine and gross motor skills, her personality is not! She wins the hearts of many with her huge smile.
After many years of unanswered questions, her family learned she is living with a form of progressive myoclonic epilepsy. Her parents are still left with many unknowns, but choose to focus on the present to make her life as enjoyable as possible.
An important part of Skyenne’s life is her time at school, where her educational assistants are known to go the extra mile for her. Skyenne’s family contacted Variety because her current mode of transportation – her faithful blue stroller that had been used to transport her to and from school since kindergarten – was failing apart.
Besides being well worn and a little outgrown, it had a broken cross bar that made up the back frame of the stroller, making it quite unsafe for Skyenne.
With funding through Variety’s Special Needs Program, Skyenne received a new Convaid Rodeo Transit Stroller in June. She can now be transported safely and comfortably to and from school, can take cat naps anywhere and is able to go with her family on outing in the community.
“My son, Joshua, was diagnosed with Cerebral Palsy at 16 months. Although unexpected, our wonderful doctor assured us that Joshua’s disability would make us stronger as a family and he would learn to adapt. Four years ago, at the invitation of a peer, Joshua decided to try wheelchair basketball. He instantly fell in love with the sport and with training and determination has demonstrated an ability to play at a high level. He has been invited to numerous camps and tournaments across Canada and played for Team Manitoba in the 2015 Canada Games. Unfortunately, there is little funding available for this sport and as Joshua continues to grow he is in need of a bigger and more stable chair to continue to play wheelchair basketball at this level.“ (Joshua’s Mom)
Variety, the Children’s Charity of Manitoba, in partnership with the Cerebral Palsy Association helped Joshua get a new sport wheelchair. He can now continue to pursue competitive wheelchair basketball and fulfill his dreams of one day playing on the Canadian National team at the Olympics.
Madisyn is 12 years old and lives with her family in Thompson. She loves listening to music and playing with light up toys!
Madisyn is living with cerebral palsy, severe global developmental delays, visual impairment, seizure disorder and is tube-fed. Madisyn often has to meet with numerous specialists in Winnipeg regarding her development, which is nearly 800kms away. For years her family has been transporting her in their 2010 van that was modified for wheelchair access to meet Madisyn’s needs. But recently, the van has been having an increasing number of mechanical repairs. The air conditioning is broken, the main evaporation unit required replacement and the significant snow Thompson receives was continually creating issues for the low riding van. With Madisyn’s condition, not having a wheelchair accessible vehicle is not an option; it is the only way to transport Madisyn in her home community and to specialists. Madisyn’s family reached out to Variety’s Special Needs Program and we were so happy to be able to cover a portion of the cost related to a brand new wheelchair accessible van. Now, Madisyn’s family can enjoy spending time all together, attend events in their community and safely travel to Winnipeg for medical appointments.
Caleb is 7 years old. He suffered a traumatic brain injury at birth which resulted in his diagnosis of severe Cerebral Palsy. He enjoys school, swimming, playing basketball with friends and he loves to bug his little sister Chloe. Chloe is 5. She plays with Caleb and helps him. Lately she has taken an interest in learning how to feed him. This seating system with its high/low base allows us to lower the seat to her level so that she can safely help and play with him.
Caleb is currently in his Leckey Squiggles seating system that he has out grown. The chair we are requesting funding for is the Leckey Mygo. This seat is the size up from his current system. Caleb has used his current system from the age of 18 months old until now, age seven. The seat is designed for Children aged 1-5. With his small build it has allowed us to keep him in the seat longer and will do the same with the new seat. If we receive funding we plan to donate his current seating system to a family with a smaller child who will be able to enjoy the benefits of a seat like this as much as we have.
Caleb is tube fed. This seat allows for perfect positioning for any mood. If he is ill we can recline for times when he has really low tone. It has a high/low base which allows him to sit at the table with us or near the floor with friends. The seat comes apart to allow us to take the seat to our family’s homes for gatherings and outings.
The funds will help us to keep Caleb in the perfect chair for his growing body. This chair will grow with him into his teens. Caleb attends Conductive Education therapy that is not government funded. This therapy cost up to $900 (every 3 months). Having a child with a disability comes with tremendous cost.”– Caleb’s Mom.
Variety was thrilled to support Caleb in accessing his new Leckey Mygo Chair. He loves it!
The terrain at Variety’s Camp Brereton can be challenging for children, especially those with special needs. In 2018, we planned to add 1,000 linear feet of 5 foot wide asphalt pathways with tactile transition markers at key locations, and luminescent paint on path edges; unfortunately we were unable to secure enough funds to move forward with the project. We now intend to complete this project in 2019, giving us a little more time to find the remaining $17,000 needed. These pathways will connect the Activities Lodge and Dining Hall to the beach area, camper cabins and fire pit area to dramatically increase our site’s accessibility and provide equal opportunity for all children to participate.
Braelynn was healthy and thriving and was meeting all of her developmental milestones on time. When she was 6 months old, her parents started to notice she was no longer bearing weight on her legs. At 10 months old Braelynn was not making any attempts to stand and was not able to crawl. At this point in time the family’s pediatrician became concerned and made a referral to a developmental pediatrician, who then made a referral to a pediatric neurologist. When Braelynn was 14 months old, shortly after her appointment with the neurologist, on April 12, 2017 the family was told that their daughter had a rare disease called, Spinal Muscular Atrophy.
Spinal Muscular Atrophy (SMA) is a genetic neuromuscular disease. Both parents have to be carriers and most do not know they are until their child is diagnosed. When the two carriers have a child there is a 1 in 4 chance their child will have SMA. It is considered a rare disease, only affecting approximately 1 out of every 10, 000 births. Children with SMA are missing the gene that provides a protein that is vital for keeping the cells in the spinal cord alive that are responsible for voluntary movement. In SMA, these cells die, making those affected unable to use their muscles. Because they cannot use their muscles, muscles atrophy and children get weaker over time, making it a progressive, life-threatening disease. It hinders the ability to walk, stand, eat, speak, breathe and swallow. Those with the most severe cases (type 1) almost always past away before their 2nd birthday and 30% with type 2 may pass away before their 25th birthday.
Braelynn was diagnosed with type 2 SMA. This means she will never stand or walk, will eventually lose her ability to sit unassisted and will increasingly have difficulty eating, swallowing and breathing. Those with type 2 also will develop scoliosis and will need corrective surgeries and braces for their back and legs. Braelynn will need ongoing medical care by numerous specialists long-term.
After the shock of Braelynn’s diagnosis wore off, Braelynn’s parents decided they would not let SMA stop her from doing anything she wants to do and made a decision to do everything in their power to give her the best possible life.
One of the most important steps for Braelynn to have the best possible life is to obtain a power wheelchair to give her independent movement. She is now just over 2 years old and does not have the ability to move herself around in any way and can only sit if placed into that position. On top of the power wheelchair, Braelynn’s family will have to make several modifications to their home for it be to completely accessible for Braelynn.
A new accessible vehicle is required to meet both Braelynn’s medical care needs and to enjoy life to her full potential as she will be dependent on a wheelchair for her mobility. Braelynn and her family reside in Niverville, MB where there is no public transportation system and a Handi Van Services is not suitable for consistent transport (financially or for convenience) for her level of care.
Braelynn cannot gain full independence and mobility, with the use of a power wheelchair until the family has a means to provide transportation with her in it. Since Braelynn recently turned two years old, she can move into the preschool program at her daycare however due to the fact that she does not have a power wheelchair this transition has been delayed and the daycare feels it is a safety concern for her to be in preschool without support for her mobility. It is very important for her to have the same access as her peers to early learning programs and Braelynn has the potential to be a bright young girl, despite the physical challenges ahead.
Braelynn is a beautiful, delightful young girl with amazingly strong and courageous family willing to do anything for her. She has so much potential and Variety’s support with a accessible vehicle can help her in achieving her dreams.
Variety’s Camp Brereton strives to be the premier accessible wilderness camp for children of all abilities that promotes exploration and inclusion, creates lasting friendships, builds self-esteem, independence, leadership and allows all campers to “just be kids” in a nurturing and encouraging environment. Variety’s goal is to provide all qualifying, under-privileged, disadvantaged and children living with a disability in Manitoba an equal opportunity to experience the great outdoors in a safe, fun, inclusive and accessible environment. For a child or youth living with/or in remission from cancer, the opportunity to attend summer camp with their peers can be life-enriching, they can leave all their worries behind, focus on being themselves and it provides them with an opportunity to experience camp just like other children.
Matt is 10 years old and living with Autism. For the last year Variety has been supporting Matt so he can access music therapy. “At the beginning of the year we, weren’t sure Matt would go much beyond ten minutes. It didn’t take him long though to decide that what he and his therapist were doing was fun and interesting. He has used drums, guitar, and xylophone in a sort of musical conversation with his therapist, composing and imitating in long stretches of joint attention – one of his main social goals. There is lots of laughing too. Matt has also grown in musical skills – he has been practicing the names of notes on his own and playing simple tunes on a piano.” – Matt’s Mom
Music Therapy is unique. It isn’t about learning to create and perform music. The focus of music therapy is the development of communication and social interaction – two areas where Matt needed support with. We were so happy to hear he benefitted so much and are continuing to support him to access music therapy in 2019.
Brody is a 5 year old boy living with autism and severe delays in language and speech. Body lives in Winnipeg with his parents, 2 sisters and brother and began kindergarten this September. Since beginning kindergarten, Brody has had the opportunity to try one of his school’s Ipads to support his communication needs. Since that time, he has had success attending to the IPad and using the visual schedule for support. With support, he has also used the Proloquo2Go app to support and extend his communication skills. Given the excellent progress Brody has made in such a short period of time utilizing the IPad it was recommend by school support personnel working with Brody that a device of his own would be extremely beneficial. He would be able to use an IPad with the Prologquo2Go app to communicate at home, at school and in the community. Along with attending two 30 minute speech and language sessions per week, which Variety has also assisted in funding, Brody now has his own IPad, giving him the ability for consistency while he is learning to communicate and develop language. It will be his way of telling his family what he needs and wants.
With funding assistance from Variety for one-on-one speech and language services and an essential communication device (IPad) Brody has all the necessary tools in place to become more verbal.
In the beginning of 2017, Ricky was diagnosed with an arteriovenous malformation (AVM). AVM is an abnormal tangle of blood vessels connecting arteries and veins, which disrupts normal blood flow and oxygen circulation. An arteriovenous malformation can develop anywhere in your body but occurs most often in the brain or spine. Complications from this condition have impacted Ricky’s ability to walk and play sports, his fine motor skills, and vision, which in turn affect practical aspects of learning such as reading and writing.
To support Ricky’s learning, his school reached out to Variety requesting funding to purchase a MacBook Laptop. This laptop will serve as a device that will be instrumental to Ricky’s learning now and when he enters junior high. With the MacBook, Ricky can utilize e-books, which can be read allowed to him, access support for composing assignments and play with art apps so that he can express his love for art without needing to use his hand-eye coordination.
In December 2017, Hollie’s parents reached out to Variety requesting support for Hollie to have sessions with a Speech and Language Pathologist. When Hollie entered Kindergarten in the fall of 2017 there were concerns about her development including her speech and processing language. Hollie and her family reside in rural Manitoba where there is unfortunately no access to a Speech and Language Pathologist.
With the help of her school, it was decided Hollie could utilize the services of TinyEYE Therapy. Similar to traditional on site therapy, TinyEye online therapy enables students to visit a therapy room and meet the same therapist every week. During the online sessions, TinyEYE therapists deliver learning experiences that are highly engaging and with online activities. As students go through the therapy process the technology becomes invisible; it is like the therapist is sitting in front of them.
With Variety’s assistance, Hollie has had speech sessions on a weekly basis with her TinyEYE Therapist since January 2018. There is a computer set up for her in an area of her school where she can complete her lessons. “She has made excellent progress, although there is still a need for her to continue with more support. Her articulation errors will increase difficulty with reading, speaking and spelling if they aren’t addressed.”
This school year Variety will continue supporting Hollie to access the services of TinyEYE so she can make even more progress!