Mother of St. Louis started a fund to help families in the area with children with severe and rare disabilities

ST. LOUIS (KMOV) – A local mom is on a mission to help other families in the St. Louis. She focuses on families with children with severe and rare disabilities and helps them with basic daily needs.

Angie Kane said: “He never said a word in his 21 years of life, but he made an impression on everyone who had the honor of meeting him.

That’s how Kane describes her son, Colton. Colton was born with a rare genetic disorder. The disorder is so rare that it does not currently have a medical name.

“He started having seizures. He is completely unable to eat with his mouth. He has a ‘G’ button. He is visually impaired,” explained Kane.

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

“If it’s not for them [nurses and doctors]I wasn’t able to do it on my own,” said Kane.

With attentive care, Kane said Colton is defying all difficulties. She said doctors told her no child with the disease lived as long as he did.

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

On an October afternoon in 2021, Colton breathed his last.

“It was very sudden and unexpected,” Kane describes.

Kane said they decided to donate as much of Colton’s organs as possible. She said the hospital paid homage to their family and Colton’s life when his organs infiltrated the lives of others.

“We were faced with a parent’s worst nightmare, and so I felt I had to let Colton’s legacy live on, and the only way I knew how to do this was to start a new one. foundation,” said Kane.

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

“It [Colton’s Cause] is to help families with children with disabilities get home adjustments, nursing care, equipment, home therapy,” added Kane.

Not all families have access to these resources, though they appear to be basic needs, says Kane.

Kane explained.

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

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

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

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