Don's son Roman is a paraplegic, he lost one sister to leukemia, another,
Barbara, has leukemia, his wife Gloria is gravely ill with pneumonia.
Stem Cell Battles
See that empty wheelchair? We who fight for embryonic stem cell research
believe that wheelchairs are for temporary occupancy only. We do not accept
the diagnosis of "incurable", given to more than one hundred million
Americans with cancer, paralysis, Alzheimer's, AIDS, diabetes, MS, and more.
We are America's millions: patients, family, and friends. We support
research to bring cures, to empty the wheelchairs everywhere.
Don C. Reed, October, 2005
# 172 Friday, June 16, 2006 -
WHY WE FIGHT
In America alone, there are three hundred millions reasons to fight for stem
cell research; by which of course I mean the one hundred million people with
incurable disease or disability, and their families.
It is easy to overlook the families, who in many cases (probably most) are
the caregivers. Their suffering is all too often completely left out of the
equation.
As you read the first story, try to look around the words of the concerned
mother and see what she is going through, not just on this one day, but
every day, seven days of the week.
Pranav Goes to see ELMO
Dear Don:
Our son Pranav is 2 years and 6 months old. Like any other kid of his age he
loves ELMO and thinks ELMO is his best friend.
We live in New Jersey and about 30 minutes drive from us is the Sesame
Street Place...
But although it is close, we have not been able to go there even once until
last Memorial day. Why ? Because we need additional hands to help transport
both Pranav and his medical equipment.
Pranav has Spinal Muscular Atrophy, Type 1, the number one genetic killer of
children under 2. It is a miracle he is alive today as 80% of the kids with
Type 1 SMA don't live to see their second birthday.
So my sister and her husband came down from Austin, Texas to help.
Pranav gave them a one day course on Elmo and the gang. Once he felt they
understood properly, we said ok, lets try Sesame Place.
We decided to go at 4pm since it was hot in the morning. If Pranav gets
dehydrated he can't just have Gatorade as much as he likes. He is fed via G
tube and his special formula goes at a slow rate of 50cc an hour. He sweats
a lot and breathing is hard work for him. So we decided to go when the
weather cooled down a bit.
We carried Pranav to the van . He is a big boy, 32 lbs and is tall like his
dad. He can't sit in the car seat as he finds it hard to breathe sitting up.
His lungs are not strong. So we lay him down gently and strap him on to his
EZ vest.
He was all smiles and saying "Lets go Sesame". Then we made another trip
back home to collect all his stuff and pick up my sister to help watch him.
She has learned how to suction him in case he chokes.
We bring his Pulse Ox, bipap, cough assist, feeding pump, feeding supplies,
oxygen tank, nebulizer kit, stroller and load all that in the car. We can't
afford to forget any of these as they can cost his life.
We started the van and our young man was all excited already, saying what he
is going to do when he meets his pals. We were on the road about 15 minutes
and I was sitting with Pranav in the back seat. I could see that he was
working too hard to get breath.
I got the equipment and suctioned his lungs, helping him to breathe better.
But I was having second thoughts now, should we go back home?
We decided to continue. We reached Sesame Place around 4:45 and parked the
van.
Our Stroller is good; it has a base to keep most of his equipment. The rest
of it we carry, taking turns.
We gave Pranav one round of his medicines to help keep his airways open, fed
him some formula through the gastro tube, and transfered him to his
stroller.
We then went in to the park.
Pranav was in awe seeing so many kids and people. In his 2 and half years
this is the first time he has gone to a "recreation place". He loved
watching the kids playing in water, though I was crying in my mind wishing
my son could do this...
We watched the shows and Pranav loved the songs, which he knew already from
the TV shows. We had his oxygen drop couple of times but since we took all
his equipment with us we were able to stabilize him.
He took pictures with his favorites- Count, Ernie and Bert.
He didn't want to go home. So we thought of watching the parade.
While waiting for the parade, Pranav turned really grey and sick. I knew he
was fighting for breath and also was dehydrated. We gave him some oxygen and
I tried to give him some pedialyte.
The parade started and another of his favorite characters "Telly Monster"
came and gave him a big hug and a kiss. That really cheered him up and he
kept saying "more, more". We got him balloons and he was so happy that he
couldn't stop smiling.
It was already 7:30 and time for his next treatment and formula. So we
decided to get back to the van.
Pranav was upset we were leaving. I promised him we will take him back
there, may be on July 4th.So he is eagerly waiting for July to come.
I hope we can keep our promise.., I pray he remains healthy, stable and fit
for another trip to see his beloved ELMO..."
AND AFTERWARD..
Hello Don
Hope Gloria feels better and gets home soon. I know how it feels to have low
O2. We monitor Pranav 24 hrs a day and any oxygen count below 94 means he is
sick. Sometimes we have seen him struggling for O2 and he has gone to low
50's. Then we work on him, cough him, get his secretions out and give him
oxygen. But those times are scary and he turns grey.
I have been having terrible back pain (yeah, lifting, transferring ) and
have been totally non-functional for the past few days.
Pranav is down with some infection after our trip to Sesame place...Maybe I
shouldn't have taken him there but he is a Kid, he needs to go places and
have fun.
I am attaching a link which has Loren Eng, mom of a child with SMA,
testifying before congress. I thought it might be of interest to you."
http://www.smacoalition.org/congress06.htm
The second story I received from a friend who had it passed on to her. I do
not know the name of the original author, but will gladly credit him or her,
if they will make contact.
Normally I would not consider running anything from someone without their
direct permission, but this seemed to be an open letter, and the story it
tells is so important.
"My buddy, John, was a recent spinal cord injury, and someone I worked with
through my job in early intervention. He worked incredibly hard in rehab,
and always had a great attitude. He had a bit of a rough past, but looked at
his spinal cord injury as an opportunity to start life over, to make a new
start of things.
"John recently fell in love with one of his nurses at the care center in
which he was staying. They moved into a house and starting planning their
life together. They were blissfully happy.
"On Saturday, John, a quad who used a power chair, was home alone. For an
unknown reason he rolled outside into the back yard--probably to look at the
yard work that was being started--and his wheelchair became stuck in the
soft sand.
"Without water or a cell phone the 115 degree temps took their toll on his
body and by the time he was found, 90 minutes later, he was in cardiac
arrest. He could not be revived."
The author of the letter goes on to recommend cell phones and water bottles
to wheelchair drivers, which is very solid advice.
But it just enrages me that something as simple as going out in the back
yard could lead to the death of a loved one.
And it is an anguish to think of a mother having to fight so hard just to
take her child to the park.
I don't know the politics of the authors of the above two letters. I speak
for myself alone.
But the way I see it is simple, and clear.
We need federally funded embryonic stem cell research for cure.
We need new lines, not the few rat-feeder-cell tainted ones existing before
August 9, 2001. We need to have the roadblocks out of the way.
We need it done now.
House Resolution 810, the Stem Cell Research Enhancement Act needs to be
passed immediately.
Question: Have you contacted Senator Frist about this matter? He has the
power to bring the Stem Cell Research Enhancement Act to the Senate floor
for a vote.
He promised to do so, but it has not happened in over a year.
I suggest giving his office a polite reminder call.
His number is: 202: 224-3344.
Just tell his aide, or the tape recording that gets your opinion, that you
want the Stem Cell Research Enhancement Act brought to the floor for a
straight up or down vote, ASAP.
Thanks.
P.S. Speaking of roadblocks, the lawsuits against California's Proposition
71 stem cell research funding are still blocking full implementation,
denying research which could and should be funded immediately. Despite their
overwhelming defeat in court, the opposition is appealing, dragging out the
process as long as they possibly can.
However-Jim Downing of the Sacramento Bee reports that: ".Attorney General
Bill Lockyer's office on Wednesday submitted a petition to fast track the
appeal (emphasis added) through the 1st District Court of Appeal in San
Francisco."
The faster the better.
By Don Reed, www.stemcellbattles.com
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