St. Louis mother starts foundation to help area families who have children with severe and rare disabilities

Published: Jun. 5, 2022 at 10:20 PM CDT
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ST. LOUIS (KMOV) - One local mother is making it her mission to help other families in the St. Louis region. Her focus is on families who have children with severe and rare disabilities and helping them with basic, everyday needs.

“He never spoke a word in his 21 years of life, but he made an impression on every person who had the privilege of meeting him,” Angie Kane said.

That’s how Kane described her son, Colton. Colton was born with a rare genetic, metabolic disorder. The disorder is so rare that it doesn’t currently have a medical name.

“He started having seizures. He was unable to eat by mouth at all. He had a ‘G’ button. He was visually impaired,” Kane explained.

Kane spent most of Colton’s childhood going to specialized doctors across the country for a diagnosis. As time went on, Kane said she realized there would be no cure. Kane, with the help of in-home nurses, had to care for Colton 24/7.

“If it wasn’t for them [nurses and doctors], I couldn’t have done it on my own,” Kane said.

With a tremendous amount of hands-on care, Kane said Colton was defying all odds. She said doctors told her no child with the disease he had lived as long as him.

“In his very short life of 21 years, he has made such an impact. My heart will never be whole. He was my life,” Kane said.

One afternoon in October 2021, Colton took his last breath.

“It was very suddenly and unexpected,” Kane described.

Kane said they decided to donate as many of Colton’s organs as possible. She said the hospital made a tribute to their family and Colton’s life as his organs made their way into other people’s lives.

“We were faced with a parent’s worst nightmare, and so I feel like I have to let Colton’s legacy live on, and the only way I know how to do this is to start a foundation,” Kane said.

Kane started Colton’s Cause, which has been the main focus of her life since Colton’s passing.

“It [Colton’s Cause] is to help families of children with disabilities with modifications to the home, nursing care, equipment, therapy in the homes,” Kane added.

Not every family has access to these resources, Kane said, even though they could seem like basic needs.

“I need to take what I have learned in my 21 years of taking care of my beautiful child, and I need to pass that knowledge on, and I need to raise money so that these families can get a little bit of rest,” Kane explained.

So far, Kane’s already raised more than $30,000 for Colton’s Cause. On June 18, she’s hosting a bar crawl in Soulard with an auction with the hopes of raising even more money.

“Colton didn’t have a voice, so I had to be his voice, and I feel like I was. Now, I feel like he’s watching over me. He’s giving me the strength to do this,” Kane said.

To sign up for Colton’s Cause bar crawl or donate to Colton’s Cause, click here.