My Story
I am going to attempt to tell you a little about what its like having a child
with MD.
I got married when I was 18 and one month before my 20th birthday I had the most
beautiful baby boy. He looked perfect in every way and immediately became the
light of my life. His Dad and I were in awe. He developed in all the ways he was
supposed to. He was a little slow in walking but not unusaly so, he started to
walk at 14 months.
I started to notice when he was around 2 that he walked a little
awkward kind of like lifting his legs from the hips. My Dad and sister had a form
of muscular dystrophy but I was told because I didn't have it I could not pass
it on to my children but since he was walking funny I took him to the Scottish Rite
hospital for crippled children in Atlanta, Ga. and had him checked out. I guess
they were only looking for signs of the disease my Dad had because they said
nothing was wrong with him other that having flat feet and would grow out of it
One of the signs of what my Dad and sister had was very high arches.
Being only 22 at the time I believed the doctors. As he grew older his funny
walk became more noticeable and he seamed to fall an awful lot but I took him
back to Scottish Rite and they told me again nothing was wrong with him he
was just clumsy. I guess they were still looking for what my Dad had. This
was right around his 5th birthday. That summer I had to take him to the clinic
for his physical to start kindergarten. The nurse that examined him said there
was something wrong and wanted to make an appointment with a doctor for him.
I took him to the doctor and he immediately knew what was wrong with him but
he didn't tell me until after he had run some test. Needless to say I never
took him back to Scottish Rite and I changed his pediatrician. I could forgive
the hospital for not finding it because I'm sure they were looking for something
else but his pediatrician should have seen it in 5 years.
At the time he was diagnosed I was working with a lady who's son has MD and
she was able to tell me how to get in touch with the people at MDA. They have
been great to us over they years. They even took care of all the test except for
the initial blood test.
It is really hard to describe what it felt like to be told your beautiful
little boy will not walk past age 12 and will die before he turns 25. His
father was in denial for a lot of years. I don't think he really accepted that
he wouldn't be able to walk till he actually went into the wheel chair at
age 13, and dieing is still something neither one of us has completely accepted
we almost lost him last winter just a couple of months before his 26th birthday.
He got pneumonia and had to go on a ventilator but he is doing great right now
and he will be 27 in March. He is still on the ventilator but it's not slowed
him down any. He has been going to a lot of places this year, we went to a
car show near Macon, Ga., one in Severville, Tenn., one in Commerce, Ga. and
one in Ocala, Fla.. He has also been to Monday Nitro (wrestling), a Brave's
Game, and a Falcon's game in Atlanta.
The researchers are getting closer and closer everyday to finding a cure
we just keep praying it will be in time to save our son.
Home
Email: godsspecialangels@yahoo.com
