I am the mother of a 21 year old daughter with Achondroplasia. I raised her to be very proud of herself and that despite her physical limitations, she could accomplish everything in life. As a counselor, I knew that size was going to be an issue for others, so protecting her emotionally was key in buffering her from bullying later on. Helping her succeed in areas where she was good at, was essential. However and despite my efforts, patient of Dr. Ben Carson 3 times – she had 2 decompression and 1 ICP monitoring with him – she developed serious complications in the brain which has compromised her life and independence. A 1 and 1/2 years ago, she gave birth to a baby boy with Achondroplasia. As a result of my 21 years with my daughter, I can say that this drug may be promising if indeed, “goes to the root of the problems with Achondroplasia ” and improves the quality of their lives and reduces the chances of medical issues which in the case of my daughter affected her cognition and in the case of my grandson, may help him live one day free from having oxygen at night. He is 1 1/2 years old, and has Restricted Lung Disease because his thoracic area is small. When he was born I used to watch him breath and it was painful and sad. Knowing what I know today, I know where he is heading towards and is not pleasant. I think that if this drug can give him a chance of less medical issues and quality of life then I will go for it because it will not rob him of his identity as a little person. The drug will help but it will not cure the condition and it is a 1,000 times better than lengthening. Blessings.
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