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|As told by Jean Miller...
Kelly Elizabeth Miller was born January 28, 1968 in St. Louis, Missouri. She was
a very normal, intelligent and beautiful child. With an IQ of 156, she was doing algebra
in pre-school! Early in her school years the teachers thought Kelly was hyperactive and
she was treated for that up until the age of 12. She moved to Clearwater, Florida with her
mother Jean in 1976 to be near her grandparents George and Jean Steffens. Their deaths
within the last 2 years has caused Kelly's HD to accelerate.
attended local schools, starting with the ill-fated High Point Elementary and was in
school when the tornado hit. Kelly, who had a tendency to "daydream" looking out
the windows, warned her teacher and classmates when she saw the tornado coming at them
from across the street! She attended Bellair Elementary, Safety Harbor Middle, Oak Grove
Jr. High and Osceloa High schools.
Shortly after Kelly's 15th birthday she started complaining about everyone in school
making fun of her because she was having these involuntary movements. Kelly was 5'9"
and very beautiful and naturally drew attention to herself from her looks. Having the kids
call her spaz and all kinds of derogatory names cut her to the core. I'd study her,
especially at night while she was sleeping, and couldn't see anything unusual and thought
maybe it was all in her mind. Sure, periodically she'd spill things or stumble but I
attributed that to her always being in a hurry with everything she did. But to ease her
mind, I took her to see a neurologist. They ran every test imaginable on her and couldn't
find anything when the doctor suggested she have this new procedure done, an MRI.
The MRI showed a small amount of atrophy in the caudate nucleus area of her brain. Based
on this, the neurologist made an "educated guess" that she had Huntington's
Chorea. Say what we asked? This doctor did not have any bedside matters, was abrupt and
not very communitive. He just blurted that it was a terminal illness that he couldn't help
and when she
got worse to come see him. Kelly went to the school library and looked up Huntington's
Chorea and Xeroxed the only description they had of it... needless to say it scared us but
this article also stated that the disease was hereditary. This all occurred before the
gene for HD was discovered in 1993 and the genetic testing for it became more accurate.
The little information I could find on the disease wasn't very
encouraging either. So we spent the next 4 years taking her to a whole battery of
specialists who evaluated what the initial doctor had done (and advised me although he
didn't have bedside manners, he was thorough) then ran their owns inconclusive tests. They
were all stymied by the fact that there was no known history of the disease on either side
of the family. (I had done extensive research on my family and the data obtained from her
paternal side turned out to be "non-truths"). Two neurologists said it was wrong
for the initial doctor to have said the atrophy was HD when she could have been born with
it or it could have been caused by a nasty fall down the basement stairs when she was 2.
The Chief of Neurology at Shands Medical Hospital in Gainesville (at that time it was Dr.
Greer) called it "Kelly's Disease".
In the interim, Kelly's HD had progressed a little at a time which was more noticeable to
people who hadn't seen her in several months. She quit school at 17 and signed up for GED
classes. They tried to get her skill training through PVTI who determined she wasn't
"trainable". They were the ones who had her retested at the original
neurologist, had another MRI done which showed the atrophy had enlarged and, all with our
permission, had her declared permanently disabled and placed on SS disability before she
was 18. However we both still weren't convinced it was HD since there was no known family
By this time I had a computer and searched for information on HD. The internet had very
little information back then but I found a small group of people on AOL who were connected
to HD. When the gene was found and the testing became 99% accurate, we had Kelly tested at
USF. She shocked them by actually being happy about her positive results saying that now
she could tell people for sure what was wrong with her and hopefully they would quit
accusing her of being high or drunk (ha!, people are ignorant).
The disease progressed fairly slow the next several years. As she was robbed on one
precious ability to do things on her own, we'd figure out a another way to compensate for
that loss. Since there was very little information available on the day to day care of
people with Huntington's (pHD's), I learned you can be very resourceful when the need
arises! The most important thing was to let Kelly know, constantly, that we would not give
in easily and that, as a "team", we could face any obstacle this disease threw
in our way!
In August of 1996 Kelly developed pneumonia, was severely dehydrated and close to death as
the result of not being able to swallow anymore without choking. At that time it was
recommended that Hospice become involved in her care. That had been recommended two years
before then, too, but we had declined. This time I felt the need was real, as I could no
longer care for Kelly at home and work full time without some help...it became too
dangerous to leave her alone. There is no way of knowing how our lives would have been
affected if the Hospice of the Florida Suncoast hadn't sent their "angels" in to
help with Kelly and if my employer, Honeywell, hadn't been compassionate and caring enough
to allow me to telecommute from home half days.
This disease has robbed Kelly of the chance to experience the gifts of life, like
independence, the love of a husband and children, lasting friendships that too many of us
often take for granted. Kelly is my most profound joy and love in this life and she gives
me a great sense of pride in her continual fight to "live". The lessons Kelly
has taught people are humility and unselfish love. She finds joy in almost everything,
gives from the whole of her heart and forgives all injustices human beings have been
capable of inflicting upon her. She is, without a doubt, a beautiful angel on earth.
Although she can no longer verbalize her feelings, her eyes are the windows to her soul.
The "KELLYMOBILE"... Kelly's HD has progressed so significantly these past two
years where she was on death's door twice. It literally tore my soul out of my body to
tell my only child that it "was okay to let go". But each time she amazed
doctors, nurses, family and friends with her strong will to live! The one thing that
bothered me the most was the fact that I could no longer take her out of the house, to her
favorite place... Clearwater Beach. The idea for a lightweight gurney came to me after
seeing a baby stroller made out of PVC piping and canvas in a magazine. I thought
"wouldn't it be wonderful if someone could design something to transport people who
can no longer get around on their own so they would no longer be prisoners in their own
homes!!" There are literally thousands of people who are homebound because they can
no longer use a wheelchair and their family/friends cannot transport them without an
ambulance and attendants! (A round trip cost for a "non emergency" ambulance
transport is $700.)
Editor's note: Kelly gave up her battle with HD on 15 November 1998 at the age of 30.
God came and gently took her hand. She left in peace and with the biggest smile on her