Stratford mother looks for help getting van for daughter with spinal muscular atrophy

Posted: Updated:

A Stratford family is looking to the public or the nonprofit community to help raise the funds needed for a new van that can help a daughter with spinal muscular atrophy get to where she needs to go.

Amber Rogers, 35, was perfectly healthy when she was born. But when she got sick with the rare condition, she was not expected to live beyond the age of 2.

“If she pops off the ventilator, she can’t breathe,” said her mother, 55-year-old Venus Rogers. 

Venus Rogers is her 24-hour-a-day caregiver and her dream is to get a van so that her daughter does not have to rely on public transportation.

For the first time, Venus Rogers said she is observing Ash Wednesday from her home because she can’t get her daughter to church.

“We have no freedom, none whatsoever,” Venus Rogers said. “We can’t get to doctors’ appointments.”

Instead, Amber Rogers spends much of her time in her mini-apartment in her house converted from the family garage. To get around, Venus Rogers said that sometimes she must wait for two hours to get picked up.

Their old van, called “Amber’s Van,” was purchased through a fundraiser 25 years ago. But now it is broken down and beyond repair. The last trip Amber Rogers made in it was to her father’s funeral, who died of a heart attack 3 ½ years ago.

“I cry every day because he was my partner,” Venus Rogers said. “He helped me with Amber.”

Venus Rogers said she would never put her daughter in a nursing home and that she would “lay down her life” for her daughter.

“I can’t even explain the love I feel for Amber,” Venus Rogers said. “Amber is everything to me. My world revolves around Amber.”

She is hoping that a “miracle” will solve her transportation problem in time for Easter.

 

 

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