NOVI, Mich. – Brent and Jamie Johnson know from personal experience how difficult it can be to care for a child with multiple disabilities. Both say there are few resources available for parents caring for a child like their son, Jack.
Jack, 4, has had three years of doctors appointments and tests, but still does not have an overall diagnosis.
He does have cortical visual impairment which means his eyes are functional, but his brain can't process the visual signals, he has cerebral palsy, microcephaly, dysgenesis of the corpus callosum and is severely developmentally delayed. He cannot yet walk or talk.
The Johnsons use music to connect with Jack by often playing guitar and singing to him.
"Jack is one of the few people that will always tell you how he's feeling at that time and he's a very lovable little boy. He likes to be snuggled, he loves music," said Brent Johnson. "Music is one thing that we use to communicate with him, you know, if he's having a bad day we'll try to soothe him. Beyond that, all he wants is to be loved."
Music helps them connect with their son, but it's also the way the Johnsons are lending a helping hand to other families.
The Johnsons, along with family and friends developed Giving Songs, a nonprofit that provides resources for families with legally blind, multi-disabled children.
Giving Songs raises money through the sale of music recorded by Michigan artists. So far, 37 musicians have recorded songs at Plymouth Rocks Productions. The songs are sold on a CD or individually online.
They use the money to help families purchase an MV-1 accessible vehicle. Johnson said these vehicles can cost about $51,000.
"We can fill this gap in the lives of many families," said Brent Johnson. "To my knowledge, this is the only vehicle that you can go and purchase from the factory that's adapted for a wheel chair, everything else you have to buy a vehicle and convert it which is a really complicated process."
The Wolfe family received $10,000 from Giving Songs to help with their purchase of an MV-1 vehicle. The nonprofit also helped them secure an additional $9,000 in grants from other organizations.
"I keep saying amazing, but it really truly has been amazing," said Trish Wolfe.
The vehicle will help the The Wolfes get around with their 11-year-old son, Tyler.
"As Tyler has gotten older and heavier, you know, we knew that it was something we would need to do. and definitely outside our price range and affordability," said Wolfe.
They have only had the vehicle a short time, but they are already seeing a big difference in their daily lives.
"If one of us is here by ourselves, it's been nice because we can take him to the store, we can go get milk. we can go to the doctor's office, just with one of us, so that's been amazing," said Wolfe.
Tyler has a rare and severe form of epilepsy called Lennox Gastaut Syndrome, he is also blind, has low muscle town and strict dietary needs because of his other conditions.
"It's been hard but he's strong, he's very strong and he is happy and loving and I think he gives us the strength a lot of times" said Wolfe.
"Tyler is a happy kid. he's flirtatious, and funny and a giggle monster. He loves to travel, he loves to, he loves birds, he loves music."
While the Wolfes are thrilled Giving Songs helped them purchase the accessible vehicle they needed, that's not the only way they feel helped.
Giving Songs wants to provide resources for families who have children with multiple disabilities. The Wolfes also value the relationship they now have with the Johnsons.
"Finding this, another family that has a child that has something so similar to what Tyler has, um, it's been nice to be able to talk and to share ideas and share resources," said Wolfe.
The Johnsons love that Giving Songs is making a difference and they credit their son Jack.
"Look at what he's done, you know, here is a little guy, he's, he can't communicate well, he's challenged, he's not walking, he doesn't see, but he's inspired a community to come together in a really refreshing way," said Johnson.
Giving Songs plans to keep recording at least one artist a month.
To find out where you can purchase the CDs or individual songs, click here.
They also hold fundraising events. The next one is Jan. 24 at Karl's Cabin in Plymouth.