A Nelson toddler with a rare terminal illness that affects her motor skills is back home and doing well after a tumultuous few weeks in the Lower Mainland.
Anaya Cassin-Potts, who is 20 months old, suffers from Krabbe leukodystrophy, in which myelin disappears from her brain cells, robbing her of the ability to hold her head up, walk, talk, and smile.
Her mother, Camara Cassin, says last month Anaya began to stop breathing for a minute at a time, so she took her to the local emergency room and was told they needed to consult a respiration team.
“They tried to book me an appointment in Trail but it was going to be three weeks, so I took her to BC Children’s Hospital,” Cassin says. “We went to emergency and she was admitted right away.”
Over the next 17 days, Anaya was seen by many doctors and placed on a new medication. However, on the fourth day “she had this critical episode where her heart was racing. They were afraid she was going to die and were preparing to transfer us to the hospice. It was very emotional.”
Anaya’s father and older sister flew out to be with her, and Cassin kept family, friends, and supporters updated through Facebook and her blog. “Miraculously, she stabilized. Everyone thought she was going to die and she stabilized.”
They returned to Nelson last week. Anaya hasn’t had another seizure or critical episode since.
“During the time we were in Vancouver, she had some really rough days, and now she’s doing quite well,” Cassin says.
Sunnyhill, a health centre for disabled children, helped them find a special needs car seat, and a friend organized an online fundraiser which raised $6,000 in a matter of days,” although we’ve already spent half because the carseat was $500, coming back cost money, and I’ve had to hire someone to help me because I don’t have any nursing.”
There are other expenses, including Anaya’s medications, which are tough to cover since Cassin is at home with her daughter most of the time. “I’m still trying to work part-time at my own business but it’s a struggle,” she says.
Nelson’s Bodi Day Spa is doing a fundraiser, raffling off $1,000 worth of massage, equivalent to a year’s worth of treatment. Tickets are $10 and the winner will be announced today at a reception from 1 to 5 p.m.
Cassin is also selling windspinners and windflags she has placed in her yard on Hall Mines Road.
“The purpose is to make people smile and feel happy as they drive by, so that energy surrounds our house,” she says. “People probably think I’m crazy, but there’s a reason.”
Anaya’s condition received widespread media attention after Cassin put out a call for breast milk — the only food her daughter can handle without complications. For now, however, that is one thing they don’t have to worry about.
Many women stepped forward to offer theirs, so “we have enough in the freezer to last three months or more.”
Cassin also recently took Anaya to her sister’s class at South Nelson school and talked to students about compassion for the disabled. “It was a really great afternoon,” she says. “I hope to do more speaking to children because I think a lot of times disability is hush-hush — don’t ask what’s wrong, or don’t look. I think that’s an old, uncultured attitude. It would be good if our young people are brought up knowing we don’t need to feel sorry for disabled people or treat them like they don’t exist.”
She explained to students that while Anaya was born healthy, she won’t be able to walk or talk. “I believe she’s conscious in her body. I read to her and treat like her a normal little person. We lavish her with love and give her the best life experience we can.”