Miracle Joy was born prematurely at 23 weeks with several challenges facing her little life, some of which were a level 4 brain hemorrhage and hydrocephalus. But after 129 days in neo-natal intensive care, her grandmother, Bonnie, was there to nurture her every step, every set-back and every milestone.
When Miracle went into a coma after a severe seizure last year, she woke up two days later with doctors telling Bonnie that Miracle had lost her sight and that her prognosis was so unsure, that they did not expect her to celebrate her 6th birthday.
That was a year ago.
Miracle is now 6, her grandmother, Bonnie, called us to say the teachers were no longer teaching her Braille because her vision was returning! And after several surgeries for the bones, muscles and tendons in her legs and feet to address atrophy issues; she was now not only going to be able to steer her custom pink Freedom Concepts bike, we had made for her, all on her own – she also would no longer need any more of those surgeries, because her doctors said the bike would alleviate the need for those!
Bonnie is thrilled to have such a piece of equipment that saves her granddaughter from the invasive procedures and Miracle is just happy to have a bike that is hers and she gets to “ride with the other kids”. And, everyone at Variety of Northern California is over the moon to see her smile!
See Miracle receive her bike: http://fox40.com/2015/05/29/11-kids-get-bikes-custom-built-for-disabilities/
“I don’t think I’ll ever get used to the surge of joy I feel when I see James on his adaptive bike – dreams really do come true!” James mother, Mary, continued “I also don’t think it is a coincidence that a few weeks after receiving his adaptive bike, James walked independently for the first time, taking 14 steps from the kitchen to our living room all by his self. This bike is much more than three wheels, a handle bar and seat, it’s a doorway to Freedom.”
Variety of Pittsburgh’s “My Bike” program grants individually customised adaptive bikes to eligible children living with disabilities empowering them to experience social belonging, joy and the freedom that comes from riding a bike.
Consistently parents report these adaptive bikes are giving children with disabilities the opportunity to overcome social isolation, discover potential in their lives and experience childhood milestones most of us take for granted.
“My Bike” is not only transforming the lives of children like James, the flow on affect improves the interaction and relationship with siblings, as James sister Krissy explains, “The day that I rode bikes with my brother for the first time was one of the most amazing days of my life. It may be the best day ever!”
The “My Bike” program has gained the strong support of partners like founding sponsor, Highmark Blue Cross Shield and co-chairs, Jerry MacCleary, President of Bayer Material Science and Andrea Carelli, Senior Vice President at PNC.
Variety of Pittsburgh strives to enable children with special needs to live life to the fullest through mobility, communication and social inclusion. Experiences that many of us take for granted are what grants make possible, even riding a bike.
Mary Pat Radabaugh, Director of the IBM National Support Center for Persons with Disabilities once said, “For Americans without disabilities, technology makes things easier. For Americans with disabilities, technology makes things possible.”
“Direct Care for Kids,” is one of the many programs Variety of Philadelphia offers to children and youth living with physical and developmental disabilities to make things possible. Grants under these programs assists families obtain crucial medical equipment, devices and therapies that are not covered by insurance.
A generous grant from the Comcast Foundation enabled Variety of Philadelphia to partner with the Temple University’s Institute on Disabilities to grant tablet computers with a specialized application to children with special needs from low income families.
The tablets and application will help children improve their speech, sociability, sensory/cognitive awareness and overall behavior.
Variety partnered with Temple University’s Institute on Disabilities throughout the entire process, from creating the application to selecting the 20 individuals that best met grant-specific criteria and hosting the presentation. At the presentation each recipient was given their iPad, accessories and a $50 iTunes gift card. Representatives from Comcast and Variety interacted with the families prior to an iPad and application training session.
Variety Philadelphia is grateful to have had the opportunity to work with the Institute on Disabilities at Temple University, the Comcast Foundation, as well as the iPad recipients and their families, in order to continue making things possible for the children and families we serve.
Odley Jean, a high school senior in New York City, had her world rocked by the 2010 earthquake in Haiti. “My sister and my nephews lost their home in Haiti and they had nowhere to live, so my mom had to buy tickets for all of them to come and live over here,” says Odley. “We were living in a one-bedroom apartment and it was 13 of us.” Her grades suffered as she couldn’t do homework or get enough sleep to focus in class. “There were times I had to sleep in front of my front door,” she says, tearing up at the memory.
At the time, Odley was attending a high school, like many in NYC, with limited supports for students experiencing trauma. At a school with 80% of the population experiencing poverty, 30% of students dropping out and teachers working with 38 children in a classroom, it is easy for a student like Odley to fall through the cracks.
However, thanks to Variety New York’s grants to the organization Opening Act, Odley found the supports, confidence and strength she needed to overcome the difficulties she was experiencing. Variety New York has been supporting Opening Act for four years because of its ability to fill the gaps left by schools through innovative theater programs. Odley found a second home and herself thanks to Variety New York’s investments and Opening Act’s programs. As a result, her grades are up, her confidence has skyrocketed and she is on her way to be the first in her family to go to college!
When asked what her favorite thing is about Variety New York and Opening Act, she answers without hesitation: “How much they provide for us. I don’t think there’s any other program that would give you this much experience for free. I love it.” Her voice catches. She presses her hands against her mouth, eyes watering. When she speaks again, her voice is low and serious. “Where I come from, my mom can’t afford a class like this. So this is my opportunity to have the experience. I am so grateful to the people who donate to this program, to make people be a star, do you understand?”
Allison is a delightful 15 year-old teen who was born with Choanael Atresia, with hearing loss in both ears, and eye defects, resulting in being both cognitively and physically disabled and delayed in development. Shortly thereafter, she was also diagnosed with CHARGE syndrome, which affects tissue in various organs in the body during development. Among the difficulties Allison faces are general weakening and frailty in movement.
Over the years, Allison has watched friends and siblings grow up and enjoy cycling, but she has never had the ability to share that experience. It is for this reason that Allison’s family requested funding for a specialized tricycle from Variety. This custom-fitted bike, designed and built locally in Winnipeg, offers her stability & strength, allowing her greater safety and freedom. Allison was not able to operate a normal bicycle without risk, and for this reason, she had missed out on family & friend bicycle outings. This specialized tricycle has allowed her to experience something most young teens take for granted – the thrill, exhilaration, and simple joy of riding a bike with family and friends!
“We can’t thank Variety enough for their gracious decision to donate the trike to Allison. In more ways than you could know, it has been a tremendous blessing.” said David, Allison’s Dad
Variety of Memphis holds one of its largest “Future Kids” projects for the community during Christmas. Several members arrive early to cook breakfast for all volunteers who in return are preparing to unload a truck with all of the food items to be distributed that day. The items include a turkey, vegetables, fruit, crackers, peanut butter and a dessert. This basket will feed a family for almost a week.
All items are unboxed, separated and set up assembly style so we can quickly serve the food baskets to the less fortunate families of the Memphis area. These families are selected through the Department of Human Services, local churches and from members who may know of someone in need.
The distribution of these baskets goes to approximately 1200 children who are in need of a meal on a daily basis. We have been fortunate (unfortunate) to see some of the same families each year. The only thing we know when we do see these families come through our food line is we know they will have been fed for a few days and have had a nutritious meal.
Variety members work hard to make this a special time for these families and when the cars come through with children in them they hand out the baskets and before the car pulls away we hand out stuffed animals to the kids. Sometimes if someone is willing we will have a member dress up as Santa to hand out the gifts to the kids.
This is a rewarding experience for the members who faithfully show up during any kind of weather to support the less fortunate of Memphis.