Fly Sophea
I received a request from a friend to post a link to a fundraising site for 5-year-old Sophea, a local girl who has been diagnosed with Congenital Muscular Dystrophy, a rare form of MD. She needs to be flown to London for more treatment, and her family needs help with medical costs and refitting their home to help Sophea get around. The Lowell Sun has an article as well.
They’re doing some fundraising around the Lowell Folk Festival, so if you plan on coming up to Lowell for that anyway, chip in. The website is: www.flysophea.org. There’s also a silent auction or else, you can just send money. For more information, contact Paulette at 978-459-7043 or via email: rencar [at] comcast.net (replace the [at] and spaces with @).
[Filed under Relief Work]
[link]
July 12th, 2006 at 8:18 pm
Those of you who may recognize my name can probably figure out why I have never posted before now, but I had
to respond to the blog above.
Along the same line with the youngster with the devistating illness above, my sister’s son (my nephew) has a terminal
illness called Spinal Muscular Atrophy. There is an article about another little girl who has this disease
in tonight’s paper.
http://www.lowellsun.com/local/ci_4041722
Like the lack of research on the disease that little Sophea is facing, CMD. There was also no research being
done on SMA when my nephew was diagnosed. Fortunately a group called Families of SMA (www.fsma.org) has been
able to raise money and push researchers into looking for ways to make their lives easier.
Doctors at Children’s Hospital told my sister that my nephew would be dead by the time he was 2 and if she
had any questions call. I didn’t believe her when she told me that the doctor was that crude, but she
assured me he said there was no research and he’s going to die. Just like that. Fortunately my sister
doesn’t know the meaning of “no” so she jumped in and found research that had not been approved for SMA
as well as some holistic medicines. My nephew ended up being written up in the NE Journal of Medicine
because of the progress that he made. It was only THEN that the doctor who told my sister that her son was
going to die became interested in the case.
I think it is absolutely criminal that research on diseases like CMD and SMA are not being done because they
are so-called orphan diseases. No profit so no research. SMA is 100% terminal. I don’t know about CMD.
I wish both the family of Sophea and the Charitiers all the best.
Oh my nephew, the one who the “expert” said would die by the time he was 2?
He’s 9.
July 13th, 2006 at 11:26 am
Thanks for your story, Dave…this is why a private-only enterprise in medicine (or having primarily private-driven medicine) is not only inefficient and impractical, it’s criminal. It doesn’t work for your nephew or Sophea, and it doesn’t even work for the average citizen trying to afford health care. It also doesn’t help drive better, more sensible natural ways to treat diseases to be studied (too much at stake if you find out the REAL cause of cancer is a lack of some vitamin, or an overly-toxic environment, both fixable things - look at all the money made by cancer treatments in this country)
Someday, I hope we’ll come to our senses so no one else has to hear that their child “will die by the time he is two” when there could be much better answers and even, hell, cures.
July 19th, 2006 at 6:47 pm
Bush signed the death warrants for those folks today. Republicans would not go against their scientist-in-chief
and failed to override the veto.
July 27th, 2006 at 2:01 pm
Hi - this is in response to Dave Faneuf’s comments. I am Sophea’s mommy- she has a
mom too. I saved the article on the Chartier family - they live close to us and
perhaps through our efforts we can come upon resources that might help them as well.
So glad to hear your nephew has been beating the odds. I would love to know
how many families in the greater Lowell area are dealing with MD in its many forms.
It seems that families have to each try in their own ways to get support and I wonder
if some collaborative efforts may be helpful.