After Caleb's initial MRI we were told he has Leigh's Syndrome
which is a type of Mitochondrial Disease. When we went in for our first
visit with the Mito Specialist we found ourselves in the "Rare Disorders
Clinic" at Children's. It was a little frightening. (to say the
least)
With the invention
of Facebook people can be connected in all sorts of ways that they couldn't
before. I got connected with a small local group of Mito families but I
also got connected with some families on Facebook. I found lots of
information, resources, and ideas on FB. It was wonderful! The
specialists that we saw of course knew about Mito so sometimes I forgot it was
a rare disease.
That is until we
were in the general hospital. We didn't meet 1 doctor that had ever heard
of Mitochondrial Disease before. When we were in the hospital the weekend
before we went in for the last time, I had to explain his life story more than
4 times, none of the Doctors were familiar with the disease. The ER
doctor tried to diagnose Caleb and tell us his medications were wrong. It
was a little disheartening to hear, "I'm not familiar with the disease but
I've read his notes." Or, "so tell me about your pregnancy with
him."
At our initial
appointment with the Mito specialist he gave us information from the United
Mitochondrial Disease Foundation, or UMDF. I went on their website and besides
being a great place for information, it helped us get connected with
other Mito families in our area. They write lots of informational material for
families and doctors and they raise lots of money for research every year.
I went back to the website many times over the last year.
After Caleb passed
away we wanted them to use anything they could from his body to further
research for a cure. There is currently no cure, or even treatment for
Mitochondrial Disease. Since it is a mutation at the genetic level all
they can really do at this point is try to manage symptoms. But even then
that's like putting a band aid on a major wound, it's only slowing down the
inevitable and not even dealing with the cause of the actual problem.
We also wanted to
set up a fund and do our part in raising awareness as well as funds to further
a cure. There is a trial drug out right now that is for Leigh's Syndrome and it
is doing very well. As much as we wanted to see a cure for Caleb on this
side of heaven, it is still a possibility for many other children. We
have set up the Caleb Jacobs Research Fund through the UMDF to help find a cure
for this horrible disease.
UMDF will send out
tax receipts for all donations received and once his Fund
reaches $10,000 then Jason and I get to decide which project to fund.
There is a big long process that lots of Doctors and Scientists meet to
decide which projects will be in the pool for funding, but then we get to be a
part of the selection process. I think that is really cool and keeps us
connected to the whole thing.
WILL YOU BE PART
OF THE CURE?
Love,
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