Jordan's Story
written by mom Mardi
Our Adorable son Jordan was born on July
4th,1997. He weighed 8lbs 3ozs and was 17 inches long. From the time he was
born his doctor had some concerns about his length. He thought Jordan was
going to be a Dwarf, but looking at the height of his Dad (5'4) and the fact
everything else was normal, that thought was quickly forgotten. Jordan
seemed to progress and grow as any normal child would (1st tooth, words,
steps, etc...). It was when he began to walk that we noticed something was
not quite right, but according to each of his check-ups, things were
completely normal.
While visiting relatives in Utah at the age of 3½, my Aunt who was a Diagnostic X-Ray Technician questioned "Why does he
waddle so much as he's walking?". I couldn't say anything other than I never
really noticed it, but being the Aunt she is, she gave me a list of things to
have checked out with our Pediatrician when we got home. We made an
appointment as soon as we returned home and voiced all the concerns we had.
After several exams, loads of blood work and more x-rays than I care to
count, we finally were on the right road to finding out what if anything was
wrong with Jordan. After 2 long days, of waiting for the doctors to review
all of the results from each test, x-ray and lab work, we finally got the news
that what was wrong had nothing to do with being a Dwarf. So began our
journey into dealing with Multiple Epiphyseal Dysplasia with Skeletal
Dysplasia. It is a lifetime debilitating disease affecting Jordan's complete
skeleton causing painful malformation of all bone growth, especially the
long bones of the skeleton.
In June 2001, we had our first meeting with the Orthopedic surgeon, Dr.David
Schiffman. He went over every lab test, x-ray and each measurement that was
taken of my son to help us understand the symptoms and what the actual
diagnosis meant. He explained that this was a serious life altering disease
and there was a good chance that sometime in Jordan's life, he may end up in
a wheelchair.
He then took all the information, with our permission and sent it to his
mentors at Shriners Hospital in Texas for them to review his findings and
help plan the best course of action. After a couple of months the answers
were back and we got the news Jordan would be having his first of four
bilateral reconstructive hip surgeries in October 2001, and the 4th he
recently completed in October 2006.
The recovery alone is a 10 to 12 week process of having to be in a complete
spica cast (armpits to ankles) for the entire time and going from weighing
90lbs to 150-160lbs. He has had to miss out on a couple of birthdays and
because of the last surgery he missed 2 months of school.
Jordan is in a constant battle to keep pain at bay. He cannot run (although
he tries) jump or play ANY contact sports whatsoever. He does his best to
maintain his individuality and independence, but because he does have such a
hard time walking and moving from point A to point B this is a VERY hard
battle. The disease process has stunted Jordan's growth and he is only 3'11
at his age, meaning an almost 10 inch deficit to his peers.
He gets teased a lot and called some pretty harsh names, but because he has
an AWESOME personality and caring disposition, he is genuinely loved by most,
and it definitely helps him cope.
The disease is lifelong and Jordan will have to endure many more surgeries.
Abilities:
See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes, but only very short distances.
Read: Yes, one thing that he loves!
Use hands: Yes, but still has a hard time writing.
Siblings:
none
Child's Interests:
Jordan loves Cartoons of all types. He loves playing video games (PS2,
Gameboy SP, NintendoDS) of which my caring friends have given him to occupy
his time. He cannot get enough reading and studies Dinosaurs all the time.
He still love Yu-Gi-Oh Cards and tries to get new packs monthly.
He has quite the Dinosaur collection starting as well.
Click
HERE
for recent updates on Jordan
(use the "Search" box on the sidebar of that page
to find updates on this particular child)
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