Breakthrough Winter 2003 Page  5 News Notes For more details, go to Miracle  Michael raises $20,000 Tournament,  organizers  inspire family to make a difference The Miracle Michael Fund golf outing is held annually in memory of Michael John Shultz. “Miracle Michael” was born with severe OI and bravely battled complications from this disorder throughout his eight months of life. Despite more than 100 fractures, Michael’s smile stands as a symbol of how powerful the human spirit can be, despite the obstacles we are facing. At the Miracle Michael IV outing, $20,000 was raised to support OI Foundation research programs. Held on July 22nd, 144 golfers enjoyed a great day of fun, sun and golf at White Eagle Country Club in Naperville, Illinois. Evening activities included both a live and silent auction, along with dinner. Many special guests were on hand including Chicago Bulls legend Norm Van Lier, and David Kaplan from WGN Radio. Also attending this year’s event were the Kipperman and the Harshaw families, as well as Dr. Peter Smith, a member of the OI Foundation  Medical Advisory Council, Tim Caruso, P.T. and Julianne Weiner representing the OI Foundation. Plans are already underway for Miracle Michael V, scheduled for June 30th, 2003, with a goal to raise $25,000. Thanks again, and we hope to see you in July! I know first-hand what it is like grow- ing up with OI and spending    a    fair amount  of  time  in plaster casts. When I fell and broke some- thing, we would go off to the ER, I would get casted, heal and get on with things. Knowing  that  I had the genetic con- dition, we had our children tested at birth so we would know if they also had OI. Our first child, Ryan, does not have OI. However, I never re- ally appreciated what I put my par- ents through until the day our sec- ond child, Katie, was diagnosed with the disorder. It becomes a whole different game when your baby girl is affected. Upon learning the news, there was a range of emotional reactions in- cluding denial, fear and anger fol- lowed by the question “how bad is it?” We began the search for the an- swer  of  what  Katie’s  prognosis would be and where we should start. Due to the rarity of the condition, we wondered if we would even find a local doctor that is really familiar with OI to answer our questions. Having been associated with the OI Foundation through my mother’s volunteer work with the organization, I  contacted  Executive  Director Heller An Shapiro. We promptly  received the name of a specialist (Dr. Peter Smith) at Shriners Hospital in Chicago and a lot of great information for us to read. So we scheduled a visit to have Katie assessed. During the time from when we learned the news and when we could get in to see Dr. Smith, I had a lot of nervous energy. In  the  meantime,  the  Miracle Michael golf outing was coming up in about three weeks. The previous year I had the good fortune of being invited to this event that raises funds for OI research, and had met Beth and John Shultz, who put on the event each year in the memory of their son, Michael. They  showed  me  that  you  can make a difference and a light bulb went off in my head. Instead of just sitting back and worrying about Katie’s condition and feeling helpless, my wife, Bonnie and I decided to contact our friends, fam- ily and colleagues at work to raise awareness and ask for donations to support the research efforts of the OI by Steve Kipperman OI Foundation Member For information about how you can help or participate in the next Miracle Michael Golf Tournament, visit by John Shultz OI Foundation Member Steve  Kipperman  (l)  presents  John  Shultz  with  a  thank- you  for  the  inspiration  and  support  he  found  in  the Miracle  Michael  Golf  Tournaments. Continued on page 16
Page  16 Breakthrough Winter 2003 Inspired Continued from page 5 Continued... professionals, medical information, and peer support for medical concerns? Healthy Lifestyle: How do you maintain optimal physical health through exercise, diet, or other means? Planning for Hard Times: Adults with OI may be more likely than others to face a medical crisis that will influence their ability to work, care for family members, and/or accomplish daily living tasks. What steps have you taken to plan for potentially difficult times? When you have had a fracture, surgery, or other medical problem, how have you restructured your life and responsibilities? Mental Health: How do you deal with social stigmas surrounding OI (e.g., disability, short stature, hearing loss)? What mental health issues have you struggled with inter- nally (e.g., anxiety, fear, depression) and how have you coped with them? Tools for Independent Living: How have you maxi- mized your independence in one or more areas of life (e.g., mobility; homemaking; daily living tasks such as grooming, dressing, cooking, etc.)? How have you chosen which mobility aids are best for you (e.g., wheelchair, crutches, walker, etc.)? What resources have you turned to for maximum independence (e.g., personal aides, assisted living facilities, paratransit, TTY, etc.)? Travel: What strategies have you developed for traveling (e.g., riding on public transportation, taking trains or air- planes, getting around in unfamiliar cities, traveling with tour groups, etc.)? Home Adaptations: How have you adapted your home to be as accessible as possible for all members of your family? Making  Decisions  About  Parenting  and  Family: How have you made decisions about parenting (e.g., having biological children, adopting children, not having children)? What sources of information and support did you consult? How did you/your partner cope with the emotional issues surrounding these decisions? Day-to-Day Parenting Issues: How have you dealt with daily challenges (both practical and emotional) related to being a parent who has OI (e.g., caring for young children when you have mobility limitations, decreased strength, or pain; addressing your child’s and his or her peers’ questions about OI; caring for a child who also has OI;  etc.)? Dating, Sexuality, and Marriage: What difficulties and successes have you had in meeting potential partners, casual or long-term dating, marriage? How have you coped with particular problems that have come up? What advice or strategies can you offer to others with OI? Career Planning: How has OI influenced your career path? Where did you turn for information, resources, and assistance in your chosen career? How did you overcome challenges or barriers? Finances and Insurance: How has OI influenced your finances, in terms of health and life insurance, retirement planning, investment strategies, use of government assis- tance programs, etc? What information and resources were particularly helpful to you? Practical Legal Issues: Have you ever used the legal system to address discrimination against you as a disabled person/person with OI? Where did you turn for information and assistance? What advice would you offer to others? Retirement and Aging: How has OI influenced your plans for retirement and beyond, in terms of finances, living arrangements, career and volunteer pursuits, etc? Vignettes Needed Continued from page 20 Foundation in conjunction with the Miracle Michael outing. We were floored by the responses we received. What started out as a need to channel energy in a produc- tive direction has resulted in an annual campaign that coin- cides with the Miracle Michael event. The  first  year  we  raised  $7,500  toward  the  OI Foundation’s research funding program. This year I am pleased to say it increased to just under $10,000. More importantly, it continues to raise awareness in our communities, and build friendships that will last lifetimes. Had I not met the Shultz family at the Miracle Michael event, we probably never would have thought to do this. We cannot thank our friends, family and colleagues enough for their generosity, kind words and moral support. Attn: Young OI Entrepreneurs! If you are 17 years old or younger, and have started your own business or have a unique way of earning your pocket money, we want to hear from you! Breakthrough is planning a feature story on young entrepreneurs in an up-coming issue. Send a brief description of how you earn your pocket money to [email protected] or write to Bill Bradner at the address on page 2. If your business venture is chosen to be featured in the article, we’ll arrange an interview and ap- propriate releases through your parents.