I just got this message and I am hoping that some of my readers might be able to help this mother!! Please share this story around to your groups and chat sources if you think that you might know someone in the area that can help!!!
http://www.bclocalnews.com/kootenay_rockies/nelsonstar/news/103093564.html
A Procter woman is appealing for breast milk to help her infant daughter.
Anaya Cassin-Potts, who just turned one, was diagnosed this spring with infantile Krabbe leukodystrophy, a rare disease where myelin disappears from the brain cells.
“She’s lost her ability to develop,” says her mother Camara Cassin. “She can’t hold her head up anymore, can’t smile or eat, and has lost her eyesight.”
Anaya is also fed through a tube and is intolerant to formula.
“When she first got sick and couldn’t nurse anymore, I started pumping breast milk for her, but I’ve only ever been able to get 10 ounces a day, and she needs 30,” Cassin says.
Supplementing with formula only created excess mucus and made Anaya sick.
Cassin put out a mass e-mail seeking local moms to pump milk for her, which made a world of difference.
“Breast milk has been her saviour,” Cassin says. “It’s the one thing that’s really essential. Since she’s been on a breast-milk only diet, she’s started gaining weight, although she’s still very small, about the size of a four-month old.”
In the last few months, some of the major donors have moved, and Cassin urgently needs to find replacements.
“Even if people had some frozen breast milk they wanted to contribute, we can use that,” she says. “Fresh is preferable but frozen is still a godsend.”
Right now six women contribute one feed per day, but Anaya requires eight.
Breast milk also allows her to be put on medication to dry up secretions in her throat.
“It has a laxative effect and helps pass through her system,” Cassin says. “If she’s forced to consume formula, the medicine will interact and plug up her bowel.”
However, if she’s off the medication, they have to use a suction machine to remove mucus and phlegm from her throat.
“It’s a very loud machine that she really hates. It’s uncomfortable and makes her gag.”
Despite Anaya’s many challenges, her mother emphasizes “it’s not all bad. She has awareness of sound. She loves to go for walks and listen to the birds and flowing water. She also enjoys bath time and can still recognize the people in her life, like me and her sister Solara.
“She doesn’t move a whole lot and everything needs to be done for her, just like a newborn, but she’s not suffering every second. We have a full-time nurse who helps.”
The condition is usually fatal within two years, although some children have lived to six or seven with it.
“She’s still able to enjoy being alive,” Cassin says. “Every moment isn’t a struggle. She has a lot of good moments, she’s very loved and we’ll take good care of her.”
Women who might be able to provide breast milk can contact Cassin at 229-4034 or maraglow@gmail.com.
