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Achondroplasia

Sally Birch

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My aunt from England is just visiting me here in New Zealand. She has psuedo-achondroplasia which is more disabling than the ususal Achondroplasia, which causes dwarfism. My aunt is very small but has difficulty walking because of an abnormal twist in the lower half of her body. I felt I must reply to you because she is such an amazing woman. She was told that she would never walk and would not live past 30. She is now 74 and lives life to the full. She has come by herself from England to New Zealand to visit family. Yesterday I took her to my swimming training session and she completed 20 lengths. She loves music and is a proficient singer and recorder player. I don't know if my email will be helpful to you but I know that my aunt wants to be invloved with anything that 'able' people get to do. She has faced some terrible prejudice and with this type of disability, people tend to stare, as it is unusual. She hates people to treat her like an invalid, but appreciates help with getting up steps and reaching for high up things. She has a number of devices to help her to lead a full life. Her car and her home have been adapted to her needs. She carries a light weight stool to sit on and a small box to stand on. I think it is great that you are adopting your child and basically, given love and help when needed, your child should have a fullfilling life. You can't controll other people's prejudices, but I think it may be easier today than when my aunt was young. She was forced to live in a home and denied education and ordinary activities. She studied as an adult achieving a degree in literature. I subscribed to Healthlink due to being diagnosed with Lymphangioleiomyomatosis, which is a genetic problem. There is a history of genetic problems in our family, but I don't know of any link between my disease and Achondroplasia. If your child decides in the future to have children the decision would need to be made about the baby and the high chance of it having Achondroplasia. I don't think I've given practical advice but hope I've said some positive things. Good luck, Sincerely, Sally.

 


   
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