Hi, my name is Emily Seelenfreund. I'm 13 years old and have Osteogenesis Imperfecta. I just
graduated from the 8th grade at Roosevelt Middle School. I lead a very full and happy life. I
play many sports like track, swimming, and my favorite - basketball. One of the few things that
bothers me about being disabled is that I have never been able to ride a bike. It was always
hard for me to watch my able-bodied friends zoom off on their bikes while leaving me in the
dust. I would feel pangs of jealousy watching my sister and dad go off on bike trips together.
About two years ago at the abilities expo, I was fortunate enough to be able to ride a
handcycle for the first time. I fell in love with it instantly. As the wind rushed beneath my
ears I felt almost as if I was flying. It was hard for me to transfer back into my regular
wheelchair, which suddenly felt 10 times slower. I have been trying to get myself a handcycle
ever since. I heard about your organization and I hope that you can help me reach my dream to
own a handcycle.
June 23, 2004
Dear Athletes Helping Athletes,
The purpose of this letter is to introduce my daughter, Emily Seelenfreund, to the Foundation
and to support her application for a handcycle.
Emily entered the world on September 12, 1990. She was 7 pounds and cute as can be. Her parents
were thrilled, and so were her 4 grandparents who came to the hospital as soon as they got the
phone call that Mom (Rachelle) was in delivery.
The simple joy of the birth of a child lasted only a day. A nurse noticed that she was holding
her arm in an unusual position. An x-ray revealed that her arm had been broken during delivery.
Further x-rays demonstrated that she had many in utero fractures which were in various stages
of healing. Then came the diagnosis: osteogenesis imperfecta-the ten syllable tidal wave that
came crashing into our lives. Skipping the bio-chemistry, the end result was that her bones
were brittle and could break upon slight contact.
It is both with horror and humor that I recall Emily's earliest days. We carried her on a
pillow and treated her like a precious statue. Strollers were not safe so we remained indoors.
Desperate to go outside, we tried a Snugli. The result: a fracture.
Within a month of Emily's birth we went to N.I.H. and received advice on the cutting edge of
how to treat brittle boned babies: be aggressive and attack the disorder. Emily's athletic
career, you might say, started when she began physical therapy at the age of six months.
Sometimes people ask how many total fractures Emily has had. Rachelle always says that is the
wrong question. We don't dwell on that or the ten rodding surgeries she has endured. And we
have never calculated the amount of total days that Emily has spent immobilized in a cast. The
"right" question is: how has Emily overcome this bad roll of the genetic dice and
managed to lead a meaningful life?
The answer to that question is, understandably, not simple. An important part of the answer
lies in her involvement with organized sports. At age five she joined the Lightning Wheels, her
track and field team. Three years later she was traveling with the team to New Mexico for the
Nationals. Her proud parents bit their tongues when they said goodbye, recognizing how
independent she had become. Not many eight year old kids-whether or not they have a
disability-have traveled so far without their parents.
Just as we don't know how many fractures she has suffered, we also do not know how many total
medals she has won. We do know she has competed in countless events, starting with the 40
meters and working her way up to the metric mile-the 1500. This year she has competed in races
at the 100, 200, 400, 800 and 1500 meter distances. She also competes in field events -
javelin, shot put - as well as table tennis.
Her favorite sport, however, is wheelchair basketball. She is a fierce competitor and was a
significant contributor to the Jaguars achieving a 5th place finish in the national tournament,
which was held in Peoria this past March.
Her deep involvement in athletics has given her self-esteem, the challenge of competition and
the joy of being part of a team. Nor should we overlook the obvious: sports has given her
untold hours of simple fun. And many friends. Although Emily has always attended regular
schools and summer camps, she clearly derives a special satisfaction from her many friends she
has made from her basketball and track and field teams. They share her frustrations and
limitations, but no-one among them needs to ask any questions.
Sports have played a large part in Emily's life and will undoubtedly continue to do so in the
years ahead. This month she is trying snorkeling for the first time. Hopefully, hand-cycling
will be next.