I saw this story reported on our local news today and I thought I would share it with you all. It's about time we all treated each other like we would our loved ones, when you get down to it, we are all the same, and made out of the same stuff. Wars and disagreements are born from believing that somehow we are different. Information on how to help is listed at the bottom of the article.
Sick girl seeks help to pay clinic
Mayo Clinic can treat rare disease: mother
For more than three years, Sandrine Garceran was hooked on television medical shows -- not because she was a fan; she felt she had to watch them.
For three and a half years, Garceran watched a number of medical-mystery programs, hoping to solve the mystery of her daughter's illness. Then, one day, while watching a show about hard-to- diagnose conditions, she found it.
"She came storming into my room. I thought the dog broke its leg or something, the way she was screaming," Emilie Mansour, 14, said of her mother's reaction that day.
Emilie suffers from erythromelalgia, a rare condition characterized by redness, increased temperature and burning pain that typically affect the extremities.
After a few years of not knowing what the problem was, Emilie was diagnosed in August 2008. The condition prevents her from doing things most young teenagers naturally take for granted.
Emilie can't climb trees or go horseback riding any more; she's home-schooled; she rarely leaves her bedroom.
The temperature at her Orillia home is always at 19.5 C. Her bedroom is even cooler.
When asked Friday in her living room how she was feeling, she replied, "Can I go back to my room now?"
Once in her room, she gets on the computer and practises for her eventual desired career: a computer animator, preferably with DreamWorks Animation.
Emilie went to Barrie last weekend for a hair appointment. Before then, she hadn't left the house since Boxing Day.
"I am depressed. You talk to anyone who has this and they're on antidepressants," said Emilie, who is on an adult dose of Prozac. "And it still doesn't help, sometimes."
Her changing mood is reflected in her work.
"This was one of my bad days," she said as she opened a digitally illustrated snarling wolf, highly detailed. The next illustration she showed was a unicorn against a starry night sky.
Emilie would spend most of her time outside if she could. People with erythromelalgia are warned against too much exercise, as it exacerbates flare-ups, Garceran noted.
Garceran is reluctantly appealing to the public for help, as she has managed to set an appointment with a specialist in Rochester, Minn., at the Mayo Clinic.
Overall, Garceran said the bill, including travel and accommodation, will be $17,000. The family has little more than a month to raise the money. The appointment is set for Feb. 24.
If the money isn't raised in time, they will set another appointment and keep fundraising, but Garceran has been told it could be another six months to a year before Emilie can get another appointment.
"She's been suffering so long, and we've finally got the chance to see a specialist who knows (about Emilie's condition); it's just, he's not in this country," she said. "If we don't go in February, it's going to be a hard hit for her, not only physically, but also mentally."
The plea is a bit of a turnaround for the family, which runs the nonprofit organization Kids "Can" Help Kids. They collect cans, bottles and cash donations, and the money is used to help cover medical costs for children of families who can't afford the treatment.
Emilie also suffers from Raynaud's disease -- described on the Mayo Clinic's website as "a condition that causes some areas of your body -- such as your fingers, toes, tip of your nose and your ears -- to feel numb and cool in response to cold temperatures or stress."
Garceran, a single parent, also has Raynaud's, along with her mother, and Garceran said she's starting to show symptoms of erythromelalgia.
Her other daughter, nine-year-old Chloe, suffers from polyarticular juvenile rheumatoid arthritis.
"I get behind on my bills and I don't ask for anything," Garceran said. "But it's my child. Now, I have to."
A trust fund has been set up at TD Bank's West Ridge branch. The branch number is 3170. The account number is 6327695.
Also, to donate or to obtain more information, contact Garceran at 326-7115. Garceran is also looking for businesses that will display posters.
For more information on erythromelalgia, visit www.erythromelalgia.org.
Upon returning from the Mayo Clinic, Garceran hopes to use Emilie's situation to better educate both the public and medical professionals in Canada.