Zacari was born with a rare neuromuscular disorder called arthrogryposis multiplex congenita. Children with the disease are unable to straighten or bend their legs or arms.
Yet, according to a recent article in the West Virginian Times, Zacari, at age four, was seen happily riding his new bicycle.
Zacari’s grandmother, who is his guardian, explained that his legs are frozen in one position and he cannot bend his wrists. His hands and feet are clubbed. He has no movement in his shoulders.
A Much Needed Hand Up
The big event was hosted in his home town, Morgantown, by Playworks. The company partnered with Variety which calls itself the “Children’s Charity.” Together they gifted the $2200 adaptive bike to Zacari who was accompanied to the event by his older sister, grandmother, and great-grandmother.
The bicycle is customized especially for Zacari and his particular needs. He can enjoy riding with his sister and friends but also has the security and safety demanded by his physical constraints.
Zacari and his family were one of several families in the area that day who were given adaptive bicycles, strollers, and even communication devices. When the situation called for it and the families qualified, they received all three.
Mike Lentz, the owner of Playworks, was trained as an occupational therapist. He founded Playworks in 2008 after working in the Monongalia school system for nine years. The company now employs fourteen therapists with a client base of several hundred people. Lentz emphasized the personal and professional enjoyment he receives by helping these children.
But he said the greatest enjoyment is to watch as the children and parents realize that the child is now able to ride a bike, something they thought he would never be able to do.
Bringing Happiness Since 2014
Variety, a nonprofit, was founded by Charlie LaValee in 2014. He has since partnered with several organizations and has gifted 3,500 bicycles, modified iPads, and strollers. He has gifted millions of dollars worth of play equipment to families with children who were unable to join their friends in recreational activities due to a disability.
Hard Work and the Right Attitude
LaVallee explained that at first, he did not think they could even get fifty bicycles to give to the children as they are very expensive. He can now proudly announce that they have given out over five million dollars in special equipment.
The partnership is in fifty-nine counties in Pennsylvania and twelve counties in West Virginia. He said their goal is to help every eligible child.
LaVallee explained that the programs participate in fundraising events. In that way, many families with a disabled child will be able to qualify for the program even if they have an income of up to $131,000 for a family of four.
The goal of the companies is to help middle-income families as well as lower-income recipients. The realization is that parents with a disabled child are spending four or five times what other parents are spending.
A parent may have spent a considerable amount of money on a van that will accommodate a power wheelchair. They will not have discretionary funds for items like a special bike or an iPad, which can be an important means of communication. A child may be unable to explain how they feel or if they are frightened or perhaps even being bullied by other children.
But the main goal, as explained by LaVallee, is that they do not want to see any disabled child feeling different from other children. That is why they put an emphasis on adapting bicycles to the child’s needs and skills.
How to Qualify
LaVallee said that a note of explanation from the child’s therapist and filling out an online form are requirements for qualification.
Breaking it down even further, it would help if the therapist would indicate whether he or she believes that the child would benefit from the item and would be able to use it safely.
A Plea to Spread the Word
The team of LaVallee and Lentz have a tremendous goal of wanting to give a bike, stroller, or iPad to every disabled child. They are encouraging everyone to talk about the program and a child in need of help so that they can be closer to their friends and enjoy being part of their daily activities.
They offered a challenge to everyone who reads this article to let others know about the program.