'I refuse to let her lose what she has'

DOUGLAS COUNTY, Ore. -- Medical professionals say Spinal Muscular Atrophy (SMA) affects one in every 6,000 babies.

KPIC News talked to a local family, who is struggling to keep their SMA affected daughter alive.

Celia Vander Velden talked about getting the news when her daughter was diagnosed. "They looked at me and they said, "Well, this is one where your baby doesn't make it,"" she said.

Calypso Vander Velden will be one year old on June 8. Celia is trying everything she can to keep her daughter alive. "I did all of her medicine, right? It just doesn't feel like I did enough medicine."

Calypso has SMA, which is both a rare and incurable disease, that attacks her motor neurons. "The neurons are not telling the muscles to move," said Sandra Hendy, a local RN. "The muscles are there, they're ready to do it, but there's no pathway that connects them."

So, Calypso can barely move.

She's on a 24-hour continuous feeding tube, and can no longer swallow. Celia said Calypso's muscles just weren't working properly in her throat, and her food was ending up in her lungs.

Now, Celia has to suction calypso's mouth every few minutes.

Hendy says that some people mistake the disease for something else. "Some people blame it on the parents for not interacting, as neglect, but mom and dad are trying everything they can, and baby just does not work," Hendy said.

For Calypso's first birthday, her family is celebrating in an unusual way. "We're choosing to go to Minnesota and learn for her," Celia said. "Learn how to care for her as opposed to having a big party for her."

Minnesota is where the annual SMA conference is held.

Because Calypso has Stage 1 SMA, she may only live to be 2-years-old, but her family hasn't given up hope.

Hope is, in fact, Calypso's middle name.

They hope to meet other SMA families at the conference that can relate to one another, share insights. learn how to best care for baby calypso from parents with first hand experience.

Celia says there is only one problem: "It costs about $3,000 in travel expenses."

Celia and her family are asking for donations of any size to help cover those cost. "I refuse to let her lose what she has," she said.

If you would like to make a donation, you can do so at Wells Fargo Bank under Calypso Vander Velden's Medical Fund.