In June 2021, I was involved in a car accident that left my van totaled. Thankfully, I was by myself and no one was injured. As a single mother of four, this was my only vehicle. In addition to simply needing transportation, my six year old son, Phineas, has Foxg1 Syndrome, a rare neurological condition that will always leave him wheelchair bound. Phineas was diagnosed at 10 months old with Foxg1. We were told Phineas would most likely never walk or talk and had an unknown life expectancy. He has poor muscle control, limited use of his hands, has a feeding tube and is on multiple medications to keep his pain at bay and body functioning as normally as possible. He has seen over 25 specialists at our Children’s hospital here in Kansas City. He is currently 6 years old and weighs 30 lbs., requiring help with every daily task and activities. He needs many pieces of equipment to help his body function including a wheelchair, bath chair, stander, and gait trainer. The wheelchair comes with him wherever he goes and provides him with the ability to experience the world around him.
Because of Phin’s needs, my old van was not going to make a good vehicle for him for much longer as it was not a wheelchair accessible van. I was carrying him to his carseat and then lifting his 57 lb. wheelchair into the van. His wheelchair takes up enough space to occupy a full seat. I knew as Phineas gets older and bigger, our van would not be a realistic mode of transportation without eventually having a lift. Currently we are van-less. Because I am a single mother and provide most of Phin’s care by myself I began rock climbing as a way to build muscle strength to continue lifting Phineas and all of his equipment in and out of the house and into the van. Thankfully, grants for wheelchair accessible vans are available, but grants require you to raise your own funds first to prove the importance of the grant in your life.
The funds raised from this campaign will go to meeting Phin’s needs with the purchase of either a wheelchair accessible van or a van that can be modified to accommodate a lift. Phineas is a kid who brings incredible joy and grounding perspective on life to everyone who meets him. I am grateful to be his mother and happy to reach out for help as we are in a dire situation for a compatible vehicle for his specific needs. For more information on Phin’s rare syndrome, you can visit foxg1.org.
Thank you in advance! Our family is appreciative of any support we receive going forward.
Kayla Lyman