Welcome Friends!
Nathan C.
Arizona
Birth Date - Janurary 27, 2005
Main Diagnosis - Cystic Fibrosis
THEME: beach and sealife
Biography
Our son Nathan is a precious little miracle and sweetpea. At 10
weeks old nathan was diagnosed with Cystic Fibrosis through a rare rash that
caused his skin to look as though he'd been burned in acid and also turned his
legs green. By the time he was 6 months he had a G-tube put in along with
getting a Nissen wrap done. When hewas 10 months old he was hospitalized for 6
weeks at UMC here in Tucson. (Prior to that the other numerous hospitalizatin &
surgeries earlier that year had always been at TMC)It was such a tramatic
experience for him and he was in so much phsycial pain in his epshagus from all
the reflux getting worse, the inability to throw up anymore because we'd allowed
the Nissen surgery (big regret)and his little throat was so raw inside he
stopped eating completely any solid food at that time. This was another
devestating situaiton to be in. Still~through it all Nathan's sweet and gental
spirt has shown through.
After the first year of having his care done here in Tucson, we decided to
change CF Teams, which was a stressful, sad and hard decision for our family but
we felt over all best for Nathan. Now he's been with the CF doctor team from
Phoenix Children's Hospital for the past 5 & 1/2 years. Sometimes he's over at
St. Joeseph in Phx, but it's still the same doctor team at PCH. When Nathan was
3 we found out he also had Asthma and then later that same year, just right
before he turned 4 we found out he has EE. (Eosinaphilic Esphagitis.) This
again, is a devestating diagnosis also, but thankfull he hasn't been having many
EO flair up's in the past 2 years. he is still symptomatic, but because of the
way his CF is, mainly effecting his GI system as aposed to his lungs at this
time it's very hard to tell what's CF and what's EE. He's an incredibly smart
little guy and loves his family, adores his big brother, and has such a precious
heart full of concern for others. He had a inc
redible feeding therapist for over 3 years as well and that was a huge blessing
too.
In 2009 we were finally able to take Nathan to Our Children's House at Baylor
to their inpatient, intensive feeding month long program. It was stressful but a
blessing. Hhe still has an oral aversion and minimally eats solid food~ kind of
depends on how he's feeling on that day and time, and some days are better than
others. But we feel VERY blessed, and it's no where near as bad as it used to
be.
This October Lord willing he will get to have his Make A Wish trip on the
Disney Dream Cruise Ship to the Bahamas, so we're all really looking forward to
a nice time together. Please continue to pray those with CF and know that there
is still no cure for this disease, and same for EE. One of the biggest things
you can do is pray, get involved in helping with aspects of research and
awreness, and reach out to those who are struggeling in your own communities and
neighborhoods and churches. We feel very blessed by all the love, prayers and
support from family, friends, our church family from Christ Community and our
amazing town here in Tucson and those we've connected with on line. It's made
all the difference in the world. Here is a poem I wrote for Nathan that is found
on his main website:
OUR SON
BEFORE THE WORLD BEGAN
THE THOUGHT OF HIM WAS THERE
HIS PLANS AND DREAMS
HIS SMILES...
WHO HE WOULD LOVE
WHAT WOULD MAKE HIM CRY,
THE THINGS THAT WOULD BREAK HIS HEART...
THE THING THAT WOULD MAKE HIM DIE.
GOD HAS THE NUMBER OF OUR DAYS
JUST AS THE BIBLE SAYS,
AND JUST BECAUSE A DR. SAYS YOU HAVE A DISEASE
ISN'T THE REASON THAT CHRIST BLED.
HE HAS THE FINAL WORD
HE HAS THE HEALING POWER
CYSTIC FIBROSIS IS JUST A THIEF
WHO WANTS TO STEAL YOUR HOURS.
BUT I BELIEVE THE REPORT OF THE LORD
AND HE GAVE YOU TO US
NONE OF US ARE PROMISED EVEN ONE MORE DAY...
AND PERFECT HEALTH IN ANYONE CAN EASILY PASS AWAY,
SO WE ARE JUST AS BLESSED AS THE MOMENT YOU WERE BORN
AND WE WILL CHERISH YOU FOREVER
BECAUSE YOU ARE OUR SON.
Thank you for your time, for this site here who's graciuosly giving of their
hearts and time to care for these special children all over the USA. Please
continue to share Nathan's Story. What a blessing, Thank you for your time and
prayers.~Les
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