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| ABOUT OUR FAMILY Hi, we are the manduca family, Cheryl 26, Richard 28, savine 6, James 4, and Hailey 2! Savine is our dramatic one and i hope she remembers us when she wins her oscar, she's definately is my star, James is my holly terror and my energetic one. Hailey is my ray of sunshine, she makes everyone smiley and has to stop to say hello to everyone! I'm cheryl manduca and I love singing and dancing, teaching is also a big part of who I am! Rich loves to do landscaping and when he get's free time kicks backa nd listens to kiss or we'll watch wrestling together. My favorite is the rock, He is like a god to me-he's got the looks and the talent! Hailey,Savine and I have a rare disease called osteogenesis Imperfecta. If my daughter taught me anything it's life is to short and you need to live it to the fullest! OSTEOGENESIS IMPERFECTA Osteogenesis Imperfecta is a genetic disorder characterized by bones that break for little or no apparent cause. There are at least 5 distinct types, representing from extreme variation in severity from one individual to another. The characteristic features of oi are; bones fracture easy, short stature, hearing loss, discolored-brittle teeth, blue sclera (whites of the eye), skeletal diformities of: limb, chest, skull, scoliosis, weak muscles & a triangular face! OI AND MY FAMILY I didn't know what O.I. was before Hailey, I had broken 17 bones from the 10-14yrs of age! I would break my ankles just by walking and doctors would tell me I must of forgot i had fallen, yaeah right don't you think I would know? When I was 8mths pregnant I had punctured a whole in my amniiotic fluid and they detected by level 2 ultrasound that she had healed fractures and her legs and arms were shorter than they should be and they knew it was O.I.! They couldn't tell us what type she would have and told us to prepare for not bringing a baby home, so we made funeral arrangements and bought a crib all in the same day! Hailey was suppose to be a c-section but I went into labor a month early and they induced me and Hailey had 15 breaks that could have been somewhat prevented! Then she was born May 26, 1998 and they told me don't expect to much from her she'll be a vegetable! Several doctors had come in and asked if any of us have broken alot and only i had, they tested me and i came back as having it. Hailey has done nothing but prove them wrong, she sit's and talks, rolls and stands and is beginning to walk holding onto objects! I was doing well until recently, I have osteoporosis and my spine is colapsing and compressing a disk in my lower back into a nerve in my spine. What keeps me going and getting up in the morning is my three babies and my work with the support group-M.S.G.O.I! M.S.G.O.I. We felt very much alone and one doctor telling us one thing and another telling us something else. We felt we had no where to turn for help, the Osteogenesis Imperfecta Foundation has been so helpful and wonderful but they are in Maryland and I'm here in Mass. Rich and I wondered how many others out there are feeling the way we were and on July 26, 1999 we had our first meeting at children's hospital in Boston & we had 8 families, now a year later we have 35 families. It's a group for families, medical professional, friends of people of all types of O.I., we hold 4 meetings per year with newsletters & updates (they include pictures of the previious meeting and reminder of upcoming one). We have guest speakers on various topics of interest & a christmas party. We are trying to put a teen network together and are working on a teen newsletter. We met so many wonderful people in the group and made some great friends like john & sue and Ed & Kathy and these couples are not only my friends they are what makes the support group run smoothly and my rocks through it all! I love to help people and I hope I can continue to do so! CONTACTS Osteogenesis Imperfecta www.oif.org or 1-800-981-2663 M.S.G.O.I. e-mails: cheryl & rich msgoi@aol.com or others are: Traft3 @aol.com Jsmnh4 @ aol.com any donations we are non-profit, will be greatly appreciated but are not required to be part of this group! E-mail msgoi@aol.com and i will send you my address! Thanks for coming to my site! Cheryl & Rich Manduca |
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