Ellwood Shreve

January 19, 2019

https://www.chathamdailynews.ca/news...ar-old-madelyn

Shawn and Nicole VanderWeide can’t say for sure what a stem cell transplant will do to help their daughter Madelyn, who was born with cerebral palsy.

But the Chatham couple doesn’t to go through life wondering if this would have improved life for their four-year-old daughter, who is unable to walk, crawl or talk and requires a feeding tube. So they are paying to have the procedure performed at the Stem Cell Institute in Panama City, Panama in late February.

But, they need a little financial help.

A GoFundMe account has been set up at www.gofundme.com/stem-cell-therapy-for-maddy to help raise the final $7,500 needed to make the trip.

The VanderWeides are part of a Facebook group for families who have taken their children to the Stem Cell Institute, where the procedure has been performed for 20 years.

“They have seen gains in their children,” Nicole VanderWeide said of parents in the group.

“They also say the younger that the child is, the better outcome there could be,” she said. “We don’t want to miss the opportunity.”

Shawn VanderWeide said parents report their children focus better and others say their children have better use of their hands. Some have also seen improvements in speech.

He acknowledged some parents said nothing happen and others said their child didn’t change physically, but they became more aware of their surroundings.

“The results differ from person-to-person, it all depends on how the body takes the cells,” VanderWeide said.

Nicole VanderWeide said the stem cells repair the broken cells and depending on where they go and what they do, the results can vary.

“We’re hoping for better motor function for her, because she has very limited control with her hands,” she said.

VanderWeide said they don’t want wonder “what if” something could have changed for Madelyn.

The VanderWeides were among the recipients of funds raised through the final wild game dinner and auction organized by the Pain Court Knights of Columbus Council 9693 last year.

They were planning to use the funds so Madelyn could have an infusion procedure done at Duke University Hospital in North Carolina, using umbilical cord blood taken when brother Deacon was born eight months ago.

But Shawn VanderWeide said they learned through costly testing they paid for in the U.S. that Madelyn and Deacon’s stem cells are not compatible.

Nicole VanderWeide said the Stem Cell Institute will use donor cord blood from Panama that comes from women who donate it after having live births.

Madelyn will undergo five days of treatment, lasting 30 minutes each day.

When she returns home, the VanderWeides said it is recommended their daughter undergo physiotherapy and stimulation exercise to help her brain discover what new motor functions it can perform.

They were told it should take two to three months before any improvements are noticed.