TROY, Mich. (WXYZ) — A nine-year-old with a rare disease is getting a helping hand from her community to purchase a wheelchair-accessible van that will allow her to see the world.
Alexia Jambor has an ultra-rare undiagnosed progressive neuromuscular disease. It prevents her from being able to use her arms and legs. Yet on Wednesday, she was using her mouth to create diamond art at her kitchen table.
She is followed by a team of specialists at the University of Michigan and by the undiagnosed disease network at Duke University. Her team at U of M tailors a wheelchair for her that allows her to get around using her mouth.
But traveling in the 400-pound wheelchair has been a struggle. The family cannot afford the $80,000 cost of an accessible van.
"If I don't have his help I don't feel safe to do it because that wheelchair costs more than the car it's on," said Alexia's mom Stephanie Zendler.
It's often left the family with no option but to stay home.
When Alexia's school heard what was going on, they decided to offer support.
Kara Kucharek, her teacher at Barnard Elementary in Troy, along with the schools community outreach committee created this GoFundMe page just to try to help out.
"The biggest thing is her heart. She's incredibly caring. She is always looking out for those around her," said Kucharek. "When we started the GoFundMe, we set it at the $10,000 amount just thinking of what would be feasible for our community to be able to raise but really her family needs significantly more."
After raising a little over $1,000 on their own, 7 News Detroit reached out to local realtor Ali T. Charara to see if he might be able to help them meet the goal.
By the end of the day, Ali donated $8,700 and helped them meet the goal. With his donation, he wrote, "It feels wonderful to be able to give back to the community and support such a worthy cause. Every little bit helps, and I'm happy to contribute to making a positive difference in this child's life. I encourage everyone to consider donating and spreading the word to help reach the fundraising goal. Together, we can make a real impact and bring hope and support to those who need it most."
“Well that helps us at least we can talk to our partners at Creative Mobility and let them know that between that $10,000 and the $3,000 we have on grants that we’re$13,000 on our way to a van," said Zendler.
The mom was moved to near tears when she found out about the large donation.
When asked what Alexia would do when she got the van, she said she would go to Disney World.
To donate to Alexia's fundraiser, click here.
