Dr. Rep. Chaffetz,
To
begin to explain how our lives have changed since Ty was diagnosed over two
years ago is not possible in the two pages I am limited to. But, I'll certainly try.
Our
youngest of five, Ty has always been a favorite among his siblings, receiving
seemingly more "gushings" from his older siblings, friends,
relatives, and admittedly, us (he's the baby!).
So imagine the concern my husband and I had when, on a business trip to
CA in June 2012, we received a few concerned phone calls regarding our baby Ty.
The aunts who were watching him while we were away, talked of his incessant
thirst, his diapers being filled to capacity in the matter of minutes, his loss
of appetite and his grumpiness. Ty? The
fun-loving, full-of- energy, happy-to-be- with-anyone little boy was now
inconsolably unhappy? Perhaps he was coming down with a cold. Perhaps he was
drinking a lot because it was a hot summer. All the rationalizations went
through my head. My heart knew better.
Upon arriving
home, my husband and I saw there was a noticeable difference in Ty's
appearance. In only a week, he had lost
five pounds. This concerned me the most. I called my mom, who knew more about
diabetes since my youngest brother is diabetic. She confirmed the signs I
already knew, yet I still wanted to hope for something else. My mother-in-law,
ironically, is a juvenile diabetes educator at Primary Children's hospital.
After our trip, she came to our home, armed with meters, to test Ty. I found
out my baby had a life-threatening disease in my living room. From there it was
a blur of nurses and numbers, trainings and testing, carb counting and heart breaking.
It felt like a death. I mourned the life we once knew. I feared the future that
lay before us.
Luckily
the moments of despair were just that. Moments.
Shortly after we returned home from the
hospital, I decided to turn FEAR into FIGHT.
I heard about the JDRF's Walk to Cure Diabetes and decided to put my
efforts into raising money for a cure. Only a few weeks after Ty's diagnosis,
the Walk was a way to focus positive energy toward a common goal with the
hundreds of families with a T1D child, all in an effort to hopefully cure this
horrific disease. Unfortunately, the
first Walk we did, Ty was sick with the stomach flu. We attended, but ended up
admitting him to the hospital only hours after.
You
see, a common virus for a diabetic is not common at all. It's
life-threatening. One moment I wish to
forget, but know I never will, was a few
days after the walk, after we had been discharged from the hospital. Ty was
still not better and was having non-stop vomiting/diarrhea. He couldn't keep anything down, which for him
meant dehydration and dropping blood sugars. I sat on the kitchen floor,
sobbing, pleading with my 2-year old to eat or drink something. You can't
rationalize anything with a toddler, especially a sick one. He simply didn't
understand. I prayed and the answer came in the form of a loving neighbor and
McDonalds French fries. She came with her kids, showed how "fun"
eating this "fun" food was. With a little peer pressure, he ate a few
fries and I wept in gratitude.
We've
taken part in three Walks now and have raised thousands toward JDRF research. Our
team: Team Ty-Ty. Our motto: "If at first you don't cure, Ty-Ty
again." Part of the fund raising/awareness is that we decided every year
on July 1, the day of Ty's diagnosis to hold a neighborhood BBQ. Neighbors come together, enjoy good food and visit in
the shade on a summer evening. It has been a great success. We wanted the
tragic memory of that day in the hospital with our young son to be turned to
one of hope. Also, every year during
Diabetes Awareness month (November) I flood my feed on social media of facts
about diabetes, with the hashtag #diabetesawarenessmonth. I've received a lot
of positive feedback from friends, many of whom were unaware of the facts I post.
My hope is to debunk the myths that circulate regarding diabetes and to raise
awareness. I've also had the opportunity
to teach my children's (T1D and non) classrooms about diabetes. It has warmed
my heart to teach such impressionable minds, inquisitive and curious about what
Type 1 Diabetes truly is.
There
is no normal in this disease. For no rhyme or reason Ty's blood sugars will
yo-yo, bouncing from 400s to 40s in the matter of an hour. It is a disease that
is extremely difficult to predict. Technology is getting better at trying to
predict the fluctuations. There have been some God-sent medical advances over
the last decade, made possible through JDRF research. Ty now wears a pump. It's
almost as if one of his vital organs is strapped to him 24-7, managed by me and
powered by AA batteries. It's not without its imperfections, but it has been
extremely helpful in Ty's diabetic care. Because Ty eats so often and is picky,
I'm able to give his insulin through a remote, sometimes in increments
depending on if he finishes his meal, sometimes even when he sleeps to bring a
stubborn high blood sugar down. This has eliminated the sometimes 6-10 shots a
day that we were administering prior to the pump.
The
other device we are attempting to get right now is the continuous glucose
monitor (Dexcom). I've spoken with several families who believe this device has
saved their child multiple times. Our insurance has now denied us two years in
a row, claiming Ty is too young. This contradicts the FDA's declaration from
February of this year, which claims this is beneficial to anyone over age 2. My
insurance claims they must be 8, so we are appealing their decision. I can't
imagine anyone benefitting more from this device than a young child. It is
children who need it! Often they can't vocalize when they are high or low, but
a quick glance at the monitor would tell me where his level is at any given
time. It could even eliminate the middle-of-the-night blood sugar checks as it
will alarm if he goes out of his specified range. Yes, I wake at 2:30 a.m. daily to monitor
Ty's levels and often he is dangerously low. This constitutes administering
carbs (juice and crackers) through a sleeping mouth. Though a challenge, I'm
willing to go without a full nights' sleep every day of my life if it means Ty
will stay in range. If he drops too low, he could have a seizure, go
unconscious or even die. I'm not willing to allow that. A Dexcom would sound an
alarm should he dip too low or go too high. That way, on the nights he stays in
range, we both are able to have a peaceful night's rest. It will also allow me to see what his levels
are, remotely, when he starts school next year. I can't begin to tell you the
assurance and peace that would provide.
My main
hope for Ty's future is a cure. I believe it is possible in the very near
future, but only if we get continued support from the Federal government. Until
a cure is discovered, my hope is to have access to devices that will aid in his
care, all of which will require continued Federal funding. My hope is that he
will live a normal life, able to participate in sports, eat what he wants,
uninhibited by this disease. My hope is that Type 1 Diabetes will not define
him, that it won't be a even a dent in his armor, but the conduit that will
make him a stronger, even more powerful individual. Please continue funding for Ty and millions
like him so that his quality of life, or life itself, will not be threatened. Above
all, my hope is that Ty will love his life, embracing the challenges that come
with it, and be a voice for change in the world.......a world without Type 1
Diabetes.
Sincerely,
Melody Hillam (Mom)
