Please help us build a track system for J. that will give him multi-modal access to his whole home as he grows!
J. (5) has multiple severe disabilities, including quadriplegic cerebral palsy, intractable epilepsy, and cortical visual impairment (CVI). Since his diagnosis at just eight months old, he has undergone thousands of hours of therapies, medical appointments, and hospital stays. He’s had to contend with more in his five years than many will in a lifetime — and certainly more than any kid should.
J. is a smart, goofy, and energetic kid. He has a kind, open, and empathetic spirit and makes friends everywhere he goes. He’s currently in preschool, where he is beloved by his teachers (and once described as the “frat boy” of the class!). He loves ice cream, reading, making music, and being as wild and crazy as possible!
What we need
Our goal is to install an overhead track and lift system in our home. One that will not only help us lift J. into and out of his bed, bathtub, and wheelchair as he grows, but much more importantly: a system that will allow J. to move independently wherever he wants within the house upright, on foot.
The system we want to build will allow J. to move anywhere within the entire footprint of his bedroom and bathroom, out into the hallway and down the hall, and then anywhere within the majority of the open living, dining, and kitchen area.
This will cost approximately $90,000. (Why this or anything for disabled kids costs as much as it does is another story — and we are grateful to have a support system that we can even ask for help with a project like this.)
Family and friends helped us raise an incredible $21,350 in just four weeks in our first fundraising push. Now, we’re fundraising with Help Hope Live so we can reach an even broader community of support, so contributors can claim tax deductions, and to ensure an extra layer of security.
Why mobility matters
Real, consequential mobility in our home (vs. prescriptive movement in a therapy clinic) will provide J. with the kind of quality of life we all want for our kids. It will enable him to participate more in all aspects of life at home: in play with his sister Joan (2) and his friends of all abilities; in family routines like coming to the table when called or helping with the dishes after dinner. Things that on their own may seem small — but that will help prepare him to pursue education, work, and relationships as he grows.
Our home will serve not only our family, but other disabled people and disability families in our community. We will share our planning documents and resources we use to make this happen so that others can build off of what we learn and replicate it in their own homes. We’ll host events in our fully-accessible space, where disabled kids have what they need to play and disabled adults can feel comfortable and relax. And this is just the beginning!
THANK YOU for taking the time to read our story and considering a donation!
