"We will never find the sunny side of life, by running from the clouds!"
I was born in 1949, one of five children. At
birth, the only thing that was different was my head. They called it Cranial Tabies. Instead of a small fontanel opening, my skull development was minimal.
I understand that one of the doctors at the time thought I would develop
Hydrocephalus. It never happened but at two and a half years old, I can actually remember sticking my left foot in my Dads big shoe and when my foot hit the coffee table I twisted it and fractured my left tibia
for the first time.
You can see by this photo that
I walked and talked like any other child. My Dad was a United States Marine stationed in Camp Lejeune, North Carolina. Our
whole family lived on a base there.
I remember my parents telling me of an incident when I was but nine months old. All of us were down by the seashore;
I was walking along the seaside, a helicopter flew overhead and at nine months old I said, "Heleecoptor!"
The Marines, who were standing around, marveled at the tiniest child they'd ever seen pronouncing such a big word and
walking at such a young age.
This photo was taken of
me at THREE years old. You can see my arms are O.K.
and the rest of my skeleton looks pretty straight. Well, what I remember from age three on is a lot of pain, terror, and horror
as I had many fractures thereafter. I also had major surgeries at Variety Childrens
Hospital in Miami, Florida. These surgeries came from the genius of a doctor
In the fifties, when a horse broke its leg they would put a
rod in it by fracturing the bone in segments, pushing the rod into the intramedullary canal, casting it and waiting for it
to heal so the horse would not be destroyed. Dr. Sofield saw the goodness of this technique being used for Osteogenesis Imperfecta
children. This technique is still used to straighten out the irregular bone formation, of the limbs, of children
with this condition.
At Variety Children's Hospital I had both my Tibias and Femurs fractured to place stainless steel rods in them. My right femur, I understand, was fractured into twelve segments to accommodate the rod they placed in
it leaving me with an external scare of fifteen inches.
Living in casts was a major part of my life from three years of age until age fifteen.
I had at least sixteen surgeries and breaking bones is very painful, especially when you have no control over when
they're going to break. Spontaneous fracturing can only be termed, terrifying! I
had many unprovoked bone breaks in my arms, chest and legs.
My right lower leg, or tibia was unstable and at age six they did a bone graft which didn't take and there
was talk of cutting my leg off below the knee. The doctors told my parents that I needed a bone transplant from a family member. My Gramps volunteered first but he was refused because of his age.
My Dad was
actually on a stretcher ready to be wheeled into the operating for a piece of his hip being removed to place in my leg. He told them ahead of time that he had Malaria and at the last minute they informed
him that no bones would be taken from him because of his Malaria!
My Mom ended up having
a portion of her right hip taken out and to this day, when the weather changes, she is in pain. My leg was saved but at what a cost. Mom was a beautiful lady and had developed a career as a dancer. There went her Ballerina times.
In the fifties they didn't have child size wheelchairs. I
remember being pushed around in a baby carriage until around the age of eight! My grandfather created me a little cart on
four wheels to push around the house. It was flat and I would sit on it and take
off. When the Lone Ranger came on I would play a rider on horseback and actually
rear the front of the board up and image myself just being another horseback rider!
My parents took our whole family, grandma and grandpa
included, over to France on the Andrea Doria. I was in my baby carriage and remember on board the ship one day, looking out
into the vastness of that great ocean and thinking, where do I fit in? Everything
seemed uncomfortable, but intriguing and I loved challenges. I was the type of
child that if it could be done, I'd do it......................at a slow pace but I would accomplish whatever I set out to
When Dad retired from the Marine Corps, after
twenty years of patriotic service, we relocated to Florida because the doctors
said a warm climate would be better for my health. We lived in South Miami, Florida.
|I fractured the most as a preteen!
|My fractures hurt, just like anyone fracturing!
By age nine, I physically turned into a structural catastrophe from fracturing and gravity. I remember one time just
twirling a piece of string over my head and I fractured my left clavicle bone. Challenges were great though; when my brother's
and sister would play hide and seek with me I would just crawl into a draw and close it on myself. I was so pliable! One
doctor said I could be molded into any form.
I lived in casts and it was
at this time that Dr. Kaiser, who headed the Orthopedic Department at Variety Childrens Hospital, told my parents that he
thought he could straighten me out.
Multiple surgeries were done on my
lower extremities and they actually had me in braces and up walking for two weeks. Then, I was in physical therapy one day, walking like Frankenstein with crutches,
and I had a spontaneous fracture to my right tibia. The break was so bad that they had me back for surgery the next week.
During that surgery
they fractured my left tibia in the operating room. My mom came to visit a lot
and on the third day I was complaining about pain. She picked up the covers and noticed the swelling of my left lower leg.
I was taken to the casting room and ended up in a Spika Cast.
A spika cast goes down both legs and up to
your chest. I almost died in several of the surgeries. One I remember in particular
was incredible. I had blood going in one arm and glucose in the other. After
four days and not being able to hold down any food, my parents were told that I was dying.
A young resident, by the name of Dr. Callaback, (Doc, if you see this, I misspelled your name) saved by life. He told my parents that the cast appeared to be to tight around by chest area and
he was going to cut the cast from below my neck to my belly button.
I'll never forget
the excruciating pain of that ordeal as the drill came down on my cast. The vibrations were uncomfortable but when the Doctor
grabbed the sides of the cast and broke it slightly open, I was in extreme pain.
Too many surgeries
too fast can make you drug dependent. I actually remember looking forward to my next surgery so I could have real extreme
"Although there is alot of pain in the world,
there is alot of overcoming it too!" -Helen Keller
|Dad, Geraldine, Steve, Glenn and I'm in a Spika!
Here's Dad with the four of
us children and I am in a Spika Cast. The casts of the past were extremely uncomforta ble if you lived in a humid climate like Florida. I had to be in them, sometimes up to three months or more. I'd
sweat and they would stink and itch.
In Florida we had a swimming pool. If I wasn't in a cast, I was in the swimming pool. I feel that swimming is the
best exercise for someone with Osteogenesis Imperfecta.
I swim at
the Deering therapy center, in Kingman, Az., when I can. Another exercise that is great for someone with my condition
is a trampoline! I lay on it at five in the morning looking up at the stars and bounce laying down; thrusting my legs,
one at a time forward, like walking. This not only rotates my hips but creates a stretching motion on my back. I feel
so good after I do it for ten minutes, several times a day. It is a fourteen foot trampoline.
Now, alot of people
may not be able to do this particular exercise. I actually hang upside down from a crossbar. This not only alleviates
pressure on my neck and back but strengthens my stomach and leg muscles as well.
Anyone with bone problems, should consider a good health program . We need proper nourishment to help build bones
and proper exercise to make them solid. I am rarely sitting still. Movement is so important !