Our Great Strides team, Zach's Sidekicks, needs your help to raise money and awareness for Cystic Fibrosis. All proceeds from the sale of Zach's Sidekicks 2015 team shirts will go to the Cystic Fibrosis Foundation, to help fund the research that is vital to help Zach and others with CF. Lets help add tomorrows to the lives of those fighting the battle we fight everyday. Lets make CF mean CURE FOUND!
For more information on CF visit:http://www.cff.org/
Zachery was born on New Years Eve of 2000. Our pregnancy
had been normal, his delivery was a breeze. He was a 8 pound 5 ounce bouncing
bundle of joy. He had no health concerns that we could see.
When Zach was 3 weeks old he
got sick. His breathing was abnormal, he was coughing, wheezing, you could see
his chest muscles retracting every time he took a breath. We rushed him into
the ER. We sat in the ER waiting room for hours. They did his vitals, his
oxygen level was 78%. We still sat and waited. His lips startingturning
purple so I raised a fit. Still we sat. 4 hours later we got taken back to the
room and they swabbed his nose to test for RSV (respiratory synactil virus)and
it came back positive. We were sent home with the instruction of "just
make sure he doesn't stop breathing like that baby (pointing to the next
curtain) did". SERIOUSLY! It was terrifying. They did order him nebulizer
treatments at home (which took a day to get set up). Little did we know this
was to be only the beginning of our battle with that hospital.
Zach never really got over
the RSV. He remained sick for months. We were in and out of the ER at least
twice a week if not more. They wouldn't do anything for us. Just kept telling
us it was allergies.
At 6 months of age for some
unknown reason I asked his pediatrician to have him tested for Cystic Fibrosis.
We didn't have anyone in our family who had the disease and I just recalled
seeing it on a movie when I was a teenager (Alex: Life of a child), but somehow
I knew he needed to be tested for it. We were told "No, you don't have to
worry about that because no one in your family has it" (yes that is what I
was told).
He remained a sickly baby.
Not so many ER visits, but constant respiratory issues. Not only that, but the
kids poop smelled like rotten garbage and he looked like a little Ethiopian
baby (distended belly and all). Every doctor we took him to said it was
allergies. Allergic to dogs. Allergic to milk. Too much juice in his diet. They
said he had asthma, and that he would eventually grow out of it (hopefully). In
the meantime, we got rid of our dog, tried all different kinds of formula, only
allowed a small amount of juice a day. He had failure to thrive, so we put him
on pediasure.
Again at 1 year of age I
asked for a CF test. We had moved and switched pediatricians so I thought maybe
someone would listen to us. Again we were told no, there is no family history
so no need to worry.
Respiratory infections
continued. Failure to thrive continued. No one was doing anything to find out
exactly why our son was so sick. We tried everything the doctors told us to,
but nothing made a difference. By this time Zach had become a miserable
toddler. I mean he was a happy kid, very active, but once those stomach cramps
started all he would do is cry and cry and cry. He was so sick, we just didn't
know what to do with him, so he pretty much go whatever he wanted just to make
him happy (big mistake now that he is 12 and still wants this treatment lol).
His little sister was born
in October of 2002 and she was perfectly healthy and happy. Zach was so sick
when I had her that he couldn't come to the hospital to see us (and I was in
for a week). All he did was cry and there was no calming him.
On December 23, 2002, a day
I will never forget. I was in the shower when I heard my husband screaming for
me. I rush out to find him changing Zach's diaper with a look of horror on his
face. Something was protruding from Zach's anus. So of course we load them up
and rush off to the ER, terrified. I had never seen anything like it. We didn't
wait long to see a doctor (I was very vocal as to the emergency so I think they
just wanted us out of there). The first thing this wonderful ER doc said to us
when he walked into the room was "he has cystic fibrosis, right?"!!!!
I about cried, but instead I gave a little laugh and said "I don't know
you tell us. We have asked for testing for the past 2 years and have been
refused" FINALLY SOMEONE HAD THE SAME THOUGHT AS I DID!! The ER doctor
told me not to worry, he would be putting him in a referral to be tested ASAP.
On February 19, 2003 Zach
went in and had his sweat test done. After the test his father took him home
and I went to work. It wasn't even 4 hours later that I got a call from his dad
telling me the hospital had called. Zach tested positive for CF. I was not
surprised, as I had known all along that this was what was wrong with my son,
but I still cried.
I didn't get angry right
away. It took a little while to actually sink in that this was happening. I
immediately started researching. I collected as much information on the disease
as I could (I am one of those people that has to know all that there is too
know, good and bad).
Things have
changed so much since Zach was born. Now theydo prenatal testing to see
if mom is a carrier, and they have newborn screening. More kids get diagnosed
at birth (or even before) now than they did when I had Zach. We relied on our
doctors to do what was best for our kids and many with CF were misdiagnosed
because the disease was rare and they didn't think a baby could have CF without
a family history. Now we know that is not true. Now we know that just because
we don't know of a family member over 50 with CF that doesn't mean there isn't
one. This disease was only given a name back in the 1950's and even then it was
hard to make a diagnosis as many children died very young of what was
considered pneumonia or respiratory distress.
But even with all these advances in
diagnosis, we are still in the battle for a cure. We are so close. But,
unfortunately, the cures that are in the works are gene specific (and there are
1,000's of gene mutations that can combine to cause CF), which means that 1
cure isn't enough....not yet anyway. This is why we walk with Great Strides every year. This is why we raise money to help fund the vital research, so that our Zach (and every other person with CF) has a chance to live their lives to the fullest. If you would like to just make a donation and not get a shirt you can visit our team page at: http://fightcf.cff.org/site/TR/GreatStrides/14CentralNewYorkSyracuse?teamid=31292&pg=team&frid=3165 Thank you for your support.