Transform AJ's Life

Support AJ: A Rare Opportunity to Make a Difference

AJ is a remarkable 10-year-old boy who has defied the odds, living with MEF2C chromosome deletion syndrome—one of only 310 children worldwide with this rare diagnosis. Despite a 50% chance of survival to age five, AJ is now thriving, and we want to ensure he continues to have the best quality of life possible.

As we approach a sensitive time of year filled with election campaigns, holidays, and economic hardships, we recognize the challenges many families face. However, these factors do not diminish AJ's need to remain an integral part of our community and enjoy the best quality of life. We understand that countless families are in need, and while we do not wish to take from others, we are also reaching out for support during our time of need.

Our family urgently requires financial assistance to secure a wheelchair-accessible vehicle. We have found a car that we need, but it is priced at $142,000. It feels as though everything in AJ's world should be free or discounted, yet instead, it’s priced at two to three bazillion times what we can afford.

AJ's wheelchair cannot be transported with our current vehicles. Many people think a minivan is the best and fastest solution, but if you've lived this journey as long as we have, caring for a growing 70-pound child, you understand there are many layers to this need. For example, AJ requires hygiene and diapering 24/7. Changing him in a public restroom typically means laying him on a floor, which is neither safe nor sanitary. A vehicle like this would allow us to create a changing station in the back while still accommodating his wheelchair using the captain's chair space.

We understand that some people may not be in a position to donate financially. If that's the case, we welcome offers of services! Perhaps you are a designer who can help us brainstorm creative solutions to meet AJ's needs in a fun and innovative way. Maybe you are an architect who could provide pro bono support to create open, universal designs that allow a child like AJ to age gracefully in our home. Alternatively, if you are a promoter or connector in the community, your support in helping our family gain local support would be invaluable. Many corporations, companies, and individuals often donate to large groups with significant brand power and executive payrolls. Donating directly to AJ not only helps us skip the denial process of applying for support but also highlights that the needs of families with children like AJ extend far beyond the reach of traditional charities that allocate substantial funds to pay their executives.

In the words of Henry David Thoreau, “The mass of men lead lives of quiet desperation. What is called resignation is confirmed desperation.” We aim to break free from that cycle and create a life for AJ filled with opportunities and joy.

After years of struggle, we have finally found an incredible community at Sion School that understands AJ’s needs. Our next step is to engage an architect who specializes in creating supportive environments for children like AJ.

This fundraiser is a once-in-a-lifetime opportunity to impact AJ’s life and help our family build a future where he can thrive at home. Your generosity can help us provide the necessary support and resources to enhance AJ’s quality of life.

We encourage every supporter of our family to stand with us and prove that AJ belongs in our home. Together, we can make a difference for AJ and families like ours. Thank you for your support!