15 Comments

Please Take a Moment to Read This, It Is Very Important.

May 6 is National Wishbone Day.  The day to increase the awareness of a genetic condition called Osteogenesis Imperfecta (OI), better known as “brittle bone” disease.  The condition is characterized by fragile bones that break easily.   A person is born with the disorder and it will affect them throughout their life.  Besides the brittle bones other characteristics of the condition are, short stature, muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, and dentinogenesis imperfecta (brittle teeth).  Restrictive pulmonary disease occurs in more severely affected people.

OI can be very mild to very severe.  Some people who have the disorder will have only a few fractures in their life time while people with severe OI may have more than 500 fractures and be confined to a wheel chair.  What you need to know about people with OI is that they think and feel like anyone else. Their bones may be weak but their spirit and determination are strong.  They face challenges everyday that most of us could not imagine, but very few would ever complain.

Why am I blogging about OI on a tennis blog?  Because my son   (a tennis player) is being tested for the condition.  His symptoms are mild with only having had four fractures, osteoporosis, joint pain, bleeding tendencies, reflux and asthma, all of which are connected to a problem with collagen.  It is something I have had to learn about over the last several months.  I have been privileged to become a member of a group of people who either have OI or have children with OI.  I have learned that the battle we face on the tennis court is nothing compared to the battle these people face each and every day.  These people are my heroes.

On National Wishbone Day we ask that you take a minute to look up information about OI, take time to learn a little more so that maybe you can be a little more understanding to someone who may be a little different from you.  Don’t look at them with pity or feel bad for them.  See their courage and strength and be happy for them because they are truly just like you and me.  It is also our wish that more research can be done to find ways to treat and maybe someday cure the condition.

I would like to share with you the story of an incredible tennis player who has OI.  David Phillipson is a world-class wheelchair tennis player.  He played in the Wheelchair Tennis Showcase at Great Britain’s Davis Cup and plans to play in the 2012 Paralympics.  Follow the links to learn a little more about David.  He is a great example of what the abilities of someone with OI are rather than their disabilities.

David PhillipsonSearching the World Over: David’s Story

To learn more about Osteogenesis Imperfecta go to oif.org

Our story has not been easy for me to share with others, but I felt it was time.  If my child, and these other brave people, can face the challenge of living with Osteogenesis Imperfecta everyday I can find the courage to share my personal feelings.  The child who sits on the sidelines during the contact sports in PE, the person who is a little shorter or weaker may be a person who has OI, and they may be the strongest and bravest person you will ever meet.  I know that is true for the ones I have met.  I hope this will help shed a little light on why I don’t take tennis quite so seriously anymore.

This is one time I will ask you to push the share button below so we can reach as many people as possible and increase the awareness about Osteogenesis Imperfecta.  Thank-you for your help!

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15 comments on “Please Take a Moment to Read This, It Is Very Important.

  1. Thanks so much for sharing such a personal story. My thoughts and best wishes to your dear son. I posted your story on my facebook page.

  2. Well, I’m not a very good tennis player, but it’s always fun to watch a good game! Tennis is very popular in my little town, so there is always lots going on. Love your site, and I pressed the OI piece. Great info! Thanks for visiting my site to I could find yours!

    • Thank you for the share, I really appreciate it. I am not much of a player either. I think that is why my kids chose to play tennis, they figured we couldn’t interfer too much. Boy were they wrong. I think I would love anything my children have a passion for. It has been a great journey and the life lessons we have learned through tennis are far more important than the sport itself.

  3. Thank you for sharing a very personal story…My prayers and only wishes the best of your son…All the best, Jenny

    • Thank you. If he has OI I am hoping we are through the toughest part. I feel very lucky when I hear other people’s story. The one thing I marvel at is the strength of the parents and the people who have this condition. They truly are remarkable and inspire me in everything I do.

      • Your welcome Sandra…I am not a parent but I do feel your worry on your child. We as humans cannot falter in this trying times because parents must be strong for there children’s sake. I wish you and your family the very best in life, Jenny

  4. Thank you for sharing a very inspiring story! It is indeed remarkable how fellow parents keep up for our the kids welfare. thanks for sharing!

  5. My 37 year old daughter was diagnosed with OI at the age of 18 months. She had her first fracture at three weeks. She now has compression fractures in 6 vertebrae at any given stage. A blotched Pro-Disc (back operation) procedure 10 years ago resulted in 80 abdominal surgeries. The OI affects her tissue as well. She is in the final stages of her journey. I wish you the best of luck with your and your son’s OI journey. It is not a death sentence. Unfortunately it is a life sentence!

    • I wish you the best of luck with your daughter. I almost cried when I read this. I wish more people could understand how OI effects people. I have never met a person or parent with OI who isn’t a brave and strong individual. We have been struggling with a lot of pain lately and it breaks my heart. My son never complains about the pain and never lets it stop him but I can not imagine what life is like to live in constant pain at the age of fifteen. He is an amazing young man and I truly believe he will be stronger and braver than most people his age and will have a full life.

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