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Traci & Ben Bales
Take
heed that ye despise not one of these little ones; for I say unto
you, That
in heaven their angels do always behold the face of my Father which
is in heaven. - Matthew 18:10
Traci &
Ben are the parents of Tyler Bales. He's a friend of mine who had
his first transperson around the time I had my sekund transperson.
Unfortunately, his heart had a problem and he got to go to heaven
and see God before I got to meet him in person.
I hear
Traci & Ben are doin' gud, but I know it's still gotta be hard.
Same with the rest of his family. I think as long as I live and
as long as Mommy & Daddy live, we will always remember Traci, Ben
& a speshul little boy who brought lots of peeples happiness while
he visited here on earth.
Tyler Benton Bales
September 24, 1998 - February 2, 2000
Here's sum stuff from Tyler's Page that I think
Traci and Ben want you to know 'bout Tyler
Tyler came to this world
on September 24, 1998, 3 weeks early by induction (due to low amniotic
fluid levels) and although he had somewhat of a rough entry into
the new world, he was a very welcome and much anticipated addition
to our family, and was a beautiful 8lb 10oz, healthy baby boy!!
Although he was colicky for the first couple months of his life,
he soon got over that and was the happiest, most giggly baby in
the world. He loves Elmo. At his 1st birthday party on October 2,
1999, his friends and family made sure that he had an Elmo for every
room in the house!
At about 2 weeks of age
we noticed that Tyler had deformed ribs, which his Pediatrician
indicated was fairly common in newborns, then at 12 days old, Tyler
came down with an illness that led to a week long hospitalization
that led to a battery of tests with still no diagnosis.
At 2 months of age,
we noticed a lump in Tyler's spine, but it took doctors until Tyler
was 4 months old to acknowledge the lump. At this point, Tyler's
Pediatrician ordered some hand and chest X-rays to be done immediately
- these X-rays showed something called Congenital Kyphosis, which
is a defect in the formation of the spine, and some Spina Bifida.
It did not confirm what they were looking for, which was a Muccopolysaccharide
Disorder.
During all of the above
time, Tyler was having repeat ear infections, and a hernia also
surfaced at 2 months of age, which led to Tyler actually having
2 inguinal hernias being repaired at the ripe old age of 4 1/2 months.
During the hernia surgery the Anesthesiologist noted that Tyler
had a problem with his throat and that intubation was virtually
impossible - that if we were ever in an emergency situation, he
didn't know if ER doctors could get the tube in.
Tyler then started his
trips up to Oregon Health Sciences University (OHSU), first to see
a Neurosurgeon, then to see the Orthopaedist, who both asked us
if we had been referred to the Genetics Department to have Tyler
looked at for Muccopolysaccharidosis (MPS for short). We said "no".
The Orthopedist felt that we needed to see the Genetics Dept., and
that Tyler needed to see an Ear, Nose, and Throat Doctor to check
on his ear infections (he had 12 by the age of 8 months). Tyler
had to have an MRI done, and they were able to confirm that he had
a condition called Congenital Kyphosis. in his back, which could
get worse and cause paralysis, but they are monitoring it every
4 months to check for change - so far it has remained the same.
Tyler went in for his
tube placement surgery at 8 months of age, and while they were in
there, they discovered that he has a condition called Laryngomalacia,
which is the cause for the difficult intubation, and the extremely
loud breathing/snoring he had since he was born. Then, again, the
Doctor and the Anesthesiologist from this surgery both asked us
if Tyler was being checked for MPS - (notice a pattern here??)
Finally, we end up at
the Genetics Department of OHSU, where Tyler's first visit takes
place, and the Geneticist looked Tyler over and decided that he
really doesn't "look" like a child with the MPS disorder, yes he
has some facial features, but nothing really prominent. But even
still, they decided to run some tests.....after 2 months of waiting,
we got the results.
Tyler was diagnosed with
MPS1, further known as Hurler Syndrome - a terminal illness that
has no known cure. As for Tyler's extensive medical history - all
of the above things that Tyler has been through are all key indicators
for MPS1 - he had virtually all of the symptoms, and we discovered
that his heart and his liver are affected as well, and his fingers
are starting to curl. . .
And so began the battle
of a lifetime for Tyler Benton Bales.
Note:
Tyler lost his batttle with Hurler Syndrome on February 2, 2000,
10 days after his bone marrow transplant. The transplant itself
was going very well, but one of the symptoms of Hurler Syndrome
is heart problems. His already damaged heart couldn't handle the
chemo and the physical stress of the procedure. We received the
Preliminary Reports from the Hospital regarding Tyler's passing,
and it looks as though Ty suffered from a Cardiac Dysfunction, related
to Hurler's Syndrome. We know that he did not suffer, and simply
went to sleep. As we get the final information we will let everyone
know - we want the families of Hurler Children to be aware of all
aspects of what can happen when it comes to Hurler's. for more details,
please take the time to read the entries in the update sections
of this page.
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