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Hi Everyone!
For those unfamiliar with our story my name is Dana. My husband,
Tim, and I, are the parents of a wonderful little boy named Reid
(that is Reid's picture above). Reid suffers from the genetic
disease Cystic Fibrosis. You have probably heard of Cystic Fibrosis,
but more likely than not know it as "CF".
CF is a genetic disease that affects many organs of the body.
Pancreas, liver, and intestine are often all involved in this
complex disease; but it is the lungs that are frequently the most
prominently affected organs due to mucus build-up within the lungs
that restricts breathing and can cause dangerous opportunities for
bacterial infection. Though digestive difficulties and other
issues often accompany CF, it is the problems associated with
breathing that people see most often, or can often more easily and
readily associate with CF.
Reid, and many, most, or possibly everyone who suffer from CF must
endure daily care to keep their lungs clear and their breathing
ability as close to normal as possible. Daily, Reid must
receive multiple nebulizer and chest physical therapy treatments.
Even when he receives these treatments he and virtually all CF
patients lose an average of 2% of their lung function each year. In
addition, Reid must take 15-20 pills a day to help his body process
food; even then, we still can't make all his organs function
normally. At some point in their lives, many CF'ers must face
organ transplants as an inevitability. CF is in itself the disease,
but in many ways, time is also an enemy.
We want to find a cure before Reid's body suffers to much
irreparable damage; and we have a really good shot at doing this!
Get to know Reid!...
-
Hobbies: He has a very
large stick collection going - he finds a lot of great sticks that
are apparently impossible to pass up. He's also collecting maps
currently.
-
Age he has promised me he
will start eating vegetables: 5 . . . he swears!
-
Favorite color: Blue. He
also loves green. He tolerates pink but hasn't come around on
purple.
-
What he calls whipped
cream: Whimp cream
-
Is he a hoarder?: Yes.
There are pj's in his closet that haven't fit him for 2 years, we
have to save them "for the memories."
-
Favorite food: Always PB&J's,
he bleeds crunchy peanut butter and strawberry jelly.
-
Number of times he says
"Know what . . . " in a day: Roughly 6 million.
-
Favorite vacation: Bar
Harbor, even though he got heat stroke and and spent half a day in
the hospital.
-
Future Career: He's not
sure yet but he likes to "push buttons and move controls" so
hopefully something incorporating that.
-
Favorite Card Game: Crazy
8's - but don't change it to a suit he doesn't have.
-
Pet: He has a fish named
Goby, he wants a dog but he's "llergic."
-
Favorite thing about
preschool: Arts and crafts (more specifically - using scissors).
-
Person he hugs the most:
His little sister Nadine.
-
Person he knocks over the
most: His little sister Nadine (usually unintentional).
-
Number of pills he takes
per day: 20-30
-
Time spent doing chest
physical therapy and nebulizer treatments per week: 12-14 hours
-
Life expectancy: 38
Each year I ask for your help in finding a cure and each year you
get us get closer and closer to finding that cure. Last year the FDA
approved a new drug named Kalydeco which essentially cured 4% of the
CF population (those with a particular gene mutation). Researchers
are currently working on a new therapy that combines Kalydeco and
another drug in order to repair a basic gene defect. This is the
approach that would work for Reid's mutations. This has the
potential to give Reid a chance at a long, normal life and could be
available as early as 2017!
There is a lot of work to be done between now and when this new
therapy becomes available, but this news has given us more hope than
we ever dared to have before.
Most likely you are a stranger to me, and I to you, and in the space
of just a few words in a few paragraphs I have told you a little
about Reid, and asked for your help, even now when things are
difficult for so many people throughout our country and the world.
I ask you to first please take care of your own family, as I and Tim
are doing our best to care for ours. Then, and only then,
please consider a donation to this critically important cause.
Your money does not go to support Reid or to defray Reid's medical
expenses, Tim and I are his parents and we take care of those costs.
Your money will go directly to finance the research and development
of the therapy that will combine Kalydeco with another drug to, with
all of our dearest hopes, produce a therapy that will cure Reid and
every other child, adolescent and adult who suffers from this same
condition that is afflicting Reid.
Reid means so much to us, he says a million funny things a day and
we can't imagine not having him in our lives. We had a tough year
with illnesses and I worry with each cough how much damage is
being done to his lungs. Looking at him you would never know he
was sick, but Reid goes through a lot everyday to make up for that
one protein in his body that doesn't work correctly. He deserves a
chance at a long healthy life and your donation gets us that much
closer! Your support means more to my family than I think I can ever tell
you on this page. No amount is too small and every cent is
appreciated and helps to find that cure!
If you can share our story with just a few of your friends and
family it makes a huge difference.
Thank you in advance for your help.
To donate, please click
Here,
or
Here
To watch a great video clip of Reid, and to learn more
about Great Strides 2014, please click
here
and
here.
Thank you, so much. Sincerely,
Dana and Tim
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