| To add to it nearly
twenty five thousand children are born with Duchenne
Muscular Dystrophy (DMD) each year, as per an estimate
by Dr.I.C. Verma (Head, Deptt. of Genetic Medicine,
Sir Ganga Ram Hospital, Delhi). DMD happens to be just
one of the forty odd types of Muscular Dystrophies known
to us. This in itself is a telling tale of the gravity
of this problem. To compound
this problem, lack of active involvement of the govt
apparatus in determining the actual extent of the disability
problem in our country, leave alone doing something
for these hapless people has acted as a big discouragement
for individuals and voluntary organizations from taking
up the cause of the disabled.
Government has although paid some attention
to the disabled suffering from other disabilities
like polio and ways to prevent it but no effort of
any kind has been made for the suffers of Muscular
Dystrophy. Though we are not in any way undermining
the sufferings of a child suffering from polio who
requires as much care and compassion as any other
disabled child, but the kind of help and awareness
exercise that needs to be undertaken should depend
on the level of disability and the kind of crippling
affect it has on the sufferer rather than the form
it manifests itself.
We, at IAMD have taken upon ourselves
the task of creating awareness amongst the masses
regarding this cruel disease and it's ramifications
not just for the sufferer but the entire family as
in many cases more than one family member is affected
with it. We despite having very meager resources at
our disposal have been doing the best we can by holding
a summer camp each year and inviting MD afflicted
patients from across the country to share with each
other their problems and have a nice time together.
We in some cases have even taken up various problems
faced by individual patients and tried to resolve
them by taking up their cases before the relevant
authorities.
In a developed country like the U.S.,
the involvement of Hollywood actor Jerry Lewis in
raising funds for the cause of Muscular Dystrophy
patients has helped such sufferers a lot, and as a
result these suffering children are often referred
to as Jerry Kids. The efforts put in by a celebrity
like Jerry Lewis for such a noble cause is laudable
to say the least.
Here in India if we are to accomplish
our mission of helping MDs lead an honourable life
and with a smile on their face, a lot of funds, you
support & good wishes are required. It would be
a proud moment for us, if we are able to improve the
life style of an MD and make his/her life a little
comfortable. A broad smile on the face of an MD patient
would be a befitting reward for our efforts in this
regard.
Sanjana Goel
President
IAMD
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