Juvenile Diabetes Research Foundation (JDRF)
Walk for a Cure
For the short version...Our 4-year old son Alexander was diagnosed with Juvenile (type-1) Diabetes just after his first birthday. He is completely dependent on external sources of insulin, and currently has an insulin pump which we use to try and control his blood sugars. Especially since he was diagnosed so young, he faces very high risks of long-term complications, including kidney disease, diabetic retinopathy and blindness, extreme risk of heart attack and stroke, and circulatory problems potentially leading to amputation.
We had an extra shock this past year as well. My wife, participating in a medical trial for relatives of Type-1 diabetics, found out that she also was losing pancreatic function. We didn't even KNOW adults could get Type-1 diabetes, but she has now been diagnosed, and is dependent upon insulin injections, just as Alexander is. We now have TWO very good reasons to fight this disease.
The Juvenile Diabetes Research Foundation (JDRF) has one mission...to find a cure for Type-1 diabetes, and in the meantime, to help reduce long-term complications. It was founded by PARENTS of kids with Type-1 diabetes, a grassroots effort which has since raised countless millions in support of finding a cure.
PLEASE consider helping out with this cause that is obviously near and dear to our hearts! Please consider donating to JDRF!!
As you can imagine, this cause is incredibly important to our entire family. Thank you for considering helping out this incredible cause, for supporting such a wonderful organization as JDRF, and for helping me to FIGHT this disease which is taking such a heavy toll on our family.
For the extended version of our story, see below.....
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Our story began on June 1st, 2004. Our son had just turned
1-year old, and was acting very strangely in the previous few days...very
thirsty, very tired, and very cranky. I went to work that morning, but couldn't
get our son out of my mind. I looked up the symptoms online, and immediately had
a pit in my stomach. I just KNEW he had Juvenile Diabetes.
Without yet telling my wife, hoping I was just being paranoid, I took him to our
pediatrician. He scoffed at my concerns..."Too young", he said. I asked for a
blood sugar check anyway. Our nightmare began when the results came back. He had
a blood sugar reading of close to 1,000 (100 is normal), and was in a state of
advanced ketoacidosis, a dangerous condition that can lead to coma and death. He
was immediately admitted to the hospital.
That morning, I had read about what that diagnosis meant. I knew my helpless
1-year old son would face a lifetime completely dependent upon insulin shots to
control blood sugars. I knew that since he was diagnosed so young, he'd very
likely eventually face kidney damage, diabetic retinopathy potentially leading
to blindness, extreme risks of stroke and heart attack, thyroid disease, and
circulatory problems possibly leading to amputation of lower limbs.
Even worse, I pictured a childhood where Alexander would always be "different"
than the other children. I knew what being "different" often held for a child. I
pictured a childhood where he couldn't partake in cake and ice cream at a
friend's birthday party, couldn't attend a sleepover without my wife or I there
to monitor him, and just couldn't lead the same type of life that his childhood
friends would lead.
While my wife was strong those first several days, I was an emotional wreck, to
the point where one of the doctors that day turned to ME in the room and asked
if I need help.
One of the first multiple-word phrases my son put together was "No Shot!! No
Shot!!, as he'd scream while running away during the daily 3-5 shots we
administered that first year. That just destroys a parent.
Things have improved over the last year and a half. Alexander is now on an
insulin pump. He can now eat whatever he wants, whenever he wants. We just type
in the number of carbs he eats, and the pump gives (hopefully) the right amount
of insulin to control his blood sugars. Instead of 3-5 shots a day, we now do
one "site change" every 3 days, where the pump tubing physically connects to a
tiny 1/4" long plastic needle inserted under the skin.
The key to avoiding long-term complications with juvenile diabetes (as well as
type-2 diabetes) is blood sugar control. Alexander's blood sugar control is MUCH
improved on the pump. However, he still has highs, he still has lows, and he's
still at risk for long-term complications.
In the past year, our resolve to help find a cure for our son took a very unexpected turn, which has made us redouble our efforts to fight the disease. My wife, participating in a medical trial examining family ties to this disease, not only found out she had the precursor, autoimmune markers in her blood for the disease, but that she had full-blown Type-1 diabetes, with her pancreas already moving down the path towards losing the capability to produce insulin.
We didn't even KNOW that adults could get Type-1 diabetes.
It's still not common for someone her age to be diagnosed with Type-1, but the
course of the disease will progress just as it did with Alexander. She's
already dependent upon daily insulin injections to help control her blood
sugars, and just like Alexander, it's only a matter of time before she loses all
pancreatic functionality for producing insulin.
Immediately after Alexander's diagnosis, we became heavily involved in the Juvenile Diabetes
Research Foundation. They were founded in the early 1970's by parents of
children with juvenile diabetes, and have since raised over $900 million for
diabetes research. JDRF has two goals...to find a cure, and in the meantime, to
reduce long-term complications. It is through research such as JDRF conducts
that advances in diabetes care (such as the pump we now use) are achieved.
I want to make people aware that there IS another kind of
diabetes out there. It's NOT just older, out-of-shape adults that are affected.
Type-1 diabetes is much more sinister, in that it COMPLETELY renders an
individual dependent upon external insulin, and even worse, in that it primarily
first manifests itself in children like our son Alexander.
So for my shameless plug...if you're looking for a cause to donate to, funding for juvenile diabetes research is one heck of a cause.
PLEASE, PLEASE consider donating to this cause (information at the top of the
page).
Thank you....
Terry Sohl
Please mail any comments/suggestions/additional links for this page to: Terry L. Sohl
This page was last edited on 02/03/08