Charlie LaVallee and Zach Marsh are on a mission, and they need the help of everyone in Wheeling to accomplish their task.
As the CEO and community relations manager, respectively, of Variety Pittsburgh, they are on a mission to find every child in Wheeling that could use an adaptive device to improve their mobility or communication and provide those devices at no cost to the family. Southwestern Energy is the local partner for Variety Pittsburgh and is committed to the mission as well.
What is Variety?
Variety — the Children’s Charity, was founded in Pittsburgh in 1927 when a baby was left in the Sheridan Square Theater with a note asking the showmen to take care of her because her parents could not. The 11 men acted as “godfathers” to the baby, inspiring the community of Pittsburgh to provide for children in need. They received so much support for this baby girl, the group was able to provide resources to scores of other children in need.
Since that time, Variety has grown into an international organization with 42 offices in 13 countries. To date, they have raised more than $2 billion to help children throughout the world. Unlike some other charities, Variety’s mission is to provide whatever services children need. In some areas, they provide medical equipment such as hearing aids and prosthetics. Other programs include the assistance of service animals and adaptive equipment. In some communities, they sponsor after-school programs and scholarship money.
The location that started it all, Pittsburgh, has now expanded to now offer services to 54 counties in Pennsylvania and West Virginia. Variety Pittsburgh has offered their My Bike, My Stroller and My Voice programs to 12 West Virginia counties since 2012 and are anxiously looking for more children to benefit from these adaptive devices. So far, they have given out more than 2,500 devices, which is more than four million dollars of equipment that most families would not be able to splurge on.
Most children with limited mobility will never know the thrill of the wind on their face while they are riding a bike. They will never experience the milestone that neuro-typical children do of riding a bike with friends or taking their first trip to the end of the block independently.
The My Bike program provides these children with the opportunity to move with their peers and experience the freedom of being atop a bicycle. Each eligible child receives a Rifton adaptive bicycle with accessories. Each child is individually fit to ensure the bike will be supportive and easy to use. The customization of each bike promises the peace of mind for the child’s safety while he or she is enjoying the thrill of the ride and a new sense of independence.
One of the accessories that all bikes have is a stationary stand. This enables the child to use the bike in the house in poor weather conditions and provides an extra source of physical therapy that is so essential to their continued muscle development.
Angela, a mom who praises the work Variety has done, and her daughter, Aubrey, who received an adaptive bike, are both thrilled with the new mobility. “She’s able to ride this bike, and it helps her feel independent and increases her self-confidence. In the past, Aubrey has had to stay behind, but now she is included!”
Because of insurance limitations, families of a child with a disability are often forced to choose just one piece of adaptive equipment. Wheelchairs are a necessity so that is typically the only piece of mobility equipment a child will have. However, a Kid Kart Mighty Lite adaptive stroller gives families the chance to participate in the community with their child without having to make a choice between mobility and comfort.
Charlie related a time that a mother told him that they had to purchase an adaptive van in order to accommodate their son’s wheelchair. The boy would not be able to leave the house with it. However, the monthly payment on that necessary van was more than their mortgage, putting an additional financial strain on the household. Purchasing another piece of equipment was certainly out of the question. The adaptive stroller provided by Variety gave this family on-the-go mobility because the stroller collapses and can be transported in the trunk of an average vehicle.
Fifty percent of the families who apply for assistance from Variety have no disposable income at all. Many cannot afford an adaptive van and are cut off from friends and family because their child does not have a means of transportation. These strollers open new doors to children with disabilities to visit new places and feel included in outings.
Variety’s mission says, “Variety believes that no child should be left out, left behind, or isolated, and through its programs/experiences, Variety strives to give children opportunities to discover the possibilities for their own lives, and be a kid, first and foremost.” Adaptive strollers allow kids to participate in their community fully.
“Variety believes that no child should be left out, left behind, or isolated, and through its programs/experiences, Variety strives to give children opportunities to discover the possibilities for their own lives, and be a kid, first and foremost.”
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Some parents have never been able to communicate with their child. They have spent years guessing what he or she wants and crying through the days of frustration. They have watched their child harm himself in an effort to communicate with the people he loves. They don’t know if he is crying from pain or anger or exhaustion. As a parent myself, I can’t image the despair of never knowing what my child needs or wants.
This is the beauty of the My Voice program. Eligible children are given communication devices that change their silent and frustrating world into one full of relationships and communication. These tablets are outfitted with nearly indestructible cases and screen protectors. Variety works with speech pathologists to find the best app for each child to communicate effectively and easily.
Children may have access to some of these devices in school, but they are often shared between several students and almost always must be left at school at the end of the day. They still have no way to communicate with their parents and siblings. My Voice communication devices empower children to use their voice and enable to them build relationships.
Families have told countless stories about hearing “I love you” for the first time with one of these devices. One child was finally able to tell his grandmother that he preferred pancakes for breakfast when she typically only made eggs. They are able to tell doctors about pain and chose the game to play for family game night. This device opens a world of participation to a child who has only been able watch before.
Wheeling Can Help
Variety wants to open the doors to mobility and communication to every child in Wheeling who thought he or she would never have access. But they need help from the community. Before I talked to Charlie and Zach, I had never heard of Variety. Despite the fact that it was started in nearby Pittsburgh and has been providing assistance to families for nearly 100 years, I didn’t know they existed.
Variety wants everyone in Wheeling to know not only that they exist, but that they are ready and willing to provide equipment to all the children who need it. This Pittsburgh organization is fully committed to supporting their neighbors in Wheeling.
Amy Dobkin is the community relations manager for Southwest Energy and the West Virginia regional co-chair for Variety. She discovered Variety in 2015 and has become a passionate supporter of the program. Pairing her career and volunteer work has created opportunities for children and families in the Wheeling area. “What fuels my passion for the organization is the desire to create opportunities for inclusion, happiness, growth and independence for the kids. As a parent, I think that is something we all hope for our children,” she said.
“What fuels my passion for the organization is the desire to create opportunities for inclusion, happiness, growth and independence for the kids. As a parent, I think that is something we all hope for our children.”
Variety in Wheeling
Last month, Variety presented eight children with adaptive devices. At that time they gave five bikes, two strollers and a communication device. Five-year-old Jordyn Kuhns of Moundsville received both a bike and a stroller to help her and her family with access to additional mobility. It’s common that Variety would give more than one piece of equipment to a family. They want to address all of a child’s pain points possible to encourage independence, joy and relationships. At that time, they also fitted four more children for devices and are looking forward to presenting these life-changing gifts soon.
As seen in their application, the income guidelines for the program are very high. Twenty-two percent of recipients live in poverty, and poverty is still a major factor in inhibiting a child from receiving the assistance he or she needs. However, having a child with a disability is a major financial burden for families in any income bracket. The additional expenses of equipment, therapies, doctor’s visits and more severely limits a family’s disposable income.
The income guidelines for Variety are intentionally high because they want all children to have access to the adaptive equipment that will make their lives easier and more fun. The opportunity for early intervention can dramatically alter a child’s future. Every child should get the chance to communicate with those around him and participate fully in the life of his family and community.
Charlie is still struck every time by the effect these devices have on children and their families. He knew it would be Variety’s work, but he “didn’t expect the joy of the kids to change my life, too.”
Join Charlie and Zach in the joy of helping a child with disabilities embrace life fully and encourage everyone eligible to apply at their website.
• Stacey Sacco is a Wheeling native currently living in Martins Ferry with her husband and four children. She graduated with a bachelor’s degree in social work and previously worked for several social service agencies. She is currently the production editor for InWheeling Magazine and a blogger at OV Parent.