James Louis R.

was my the fourth child to be born & last
James was born 6 weeks early.
He came into this world on July 8, 1990
@ 2:47am
He was born in Strong Memorial
Rochester, New York.
Weighing in at 4 lbs. 6 oz. & 17 in. long.

He was so tiny and he was sick,
He looked healthy and all, but not like
his brother Christopher, James had to
many problems with his lungs.
James spent 3 weeks in Strong.
Then he went to Geneva General Hospital .

for 3 weeks
James, I noticed in September 1991
that James was doing and not doing, he was
1 year old now and not walking or
talking like he should have been.
James was a perfect baby never cried,

always did thing to make himself happy.
Like playing with clothespins, he loved them.
I noticed that when I did laundry he would
sit next to the washing machine and
with his ear pressed against the washing
machine. He would just laugh.

I knew something was wrong but the doctors
kept telling me he was premature
and that has a lot to do with it,
I disagreed with them.
Then on his second Birthday still not walking

or talking I went to doctors and they told me
that he had CP,
I took him to a different doctor for this
doctor to tell me the same thing.
I learn that once a CP person knows

something they just do not forget,
James was slowly going down hill.
January 16, 1993
James started having trouble drinking

you see I had to put James back onto the bottle,
Because one day sitting in his highchair, James
just did not know how to use the sippy cup anymore,

nor to eat his finger , food.
Each month he lost something that he could do.
Like sitting up, he just could not do it one day.

So in January 1993 James just would not eat or drink,

no matter what we did, it would just come
back up So I rushed James to Rochester Hospital,

45 minutes away. James

had a appointment there January 18, 1993, for a MRI ,

They kept James there. On the 18th the test was done,
The 20th of January @ 4:00 pm

I remember lying next to James and then
three doctors came into James room to tell me that

James had a gray spot on his brain
and that James had this rare disease,
and that there was 6 types
of this rare disease and only 1 of them had a
cure. James was not lucky.
They told me he was going to die!
I was told that my son had this disease that had no cure.

The disease was called
Metachronmatic Leukodystrophy
In approximately 1 in every 100,000 births,
usually occurs infancy between ages 1 and 4.
It usually begins at age 2, however, there is an
adult form of the condition. What is this disease:
Metachronmatic Leukodystrophy is a type of
metabolic disorder that leads to a deadly
build up of fats (known as lipids)
in the body and the destruction of myelin.
Myelin is a fatty nerve covering that sends impulses quickly.
Metachromatic Leukodystrophy is an inherited disorder,

meaning that it is passed onto the child
from the parents' genes we normally,
have 23 pairs of chromosomes.
In Metachronmatic Leukodystrophy,
there are only 22 chromosomes,
James was missing 1.
James was the apple of my eye, he was so
happy no matter what, always smiled
James never talked, once he said mommy.
but that was once.
They told me that James' brain was turning into jello,
to which he would lose everything one by one.
On February 1993 James got worse.
His breaths were deeper and getting shorter,
I watched my little baby boy slowly die.
James pasted in his sleep,
his little hand was in mine and I was also
sleeping.
James would have these breathing attacks
and that night he had one
March 30, @ midnight
James had a attack and this one lasted
all night, we were up for 6 hours.
Him fighting and me praying and finally that night
I told him it was OK.
I talked to him about heaven and what his headstone

would look like and all the flowers

in heaven and slowly he did calm down,

I gave him a bath and his nurse came in at 8 a.m.

March 30, 1993.
We both just fell asleep after she got there.
Like I said his hand was in mine, head to head.
My baby James pasted in his sleep @ 2:30 pm
March 30, 1993.
James was an angel from the day I held him.
He was a sweet child, he just would melt your heart.
I can remember him and Chris playing in Christopher's room.
Christopher told me 10 years after James' death,
that he wished he had never pushed him out of his room.

James would get into his brothers' match car collection

and Christopher did not like it.

Over all him and James would watch cartoons every morning together.

 James looked up to his big brother and now they are together.

James had a short life here with me and I miss him.

It has been 15 years now,
I still remember it, as if it were today

There is always a face before me,
A voice I would love to hear,
A smile I will always remember,
Of a brother I loved so dear.
Deep in my heart lies a picture,
More precious than silver or gold,
It's a picture of my brother,
Whose memory will never grow old.