Hello ,
I am Julie's mother.Julie is a young girl who is severely polyhandicapped . She suffers from a very rare illness : the Aicardi syndrom (www.aicardi.info ) I will never accept my daughter 's handicap , but I try to give her a life as comfortable as possible with as much love as possible . Since she was born , Julie has had a lot of obstructions of the lungs . These obstructions led to many stays at hospital and even sometimes in réanimation . A solution had to be found . G-tubes , were out of the question for me . I didn't want them !!!! I thought that it was an easy answer for the medical employees .!!!! I didn'tvwant them the mutilate this little stomach that I liked so much !!!! Definitely not , even if the doctors explained it with words of comfort .She wasn't their child , SHE WAS MY DAUGHTER . But one day Julie had such an important obstruction that it had to be done ; It made me suffer a lot . It was very hard to see this foreign body going out of her stomach . I was determined-once out of hospital-to keep feeding her with food and to use it only when she was ill . Months went by and her obstructions were more and more frequent .
Julie had a lot of problems with food and she was losing weight . So I had to resign myself to do it ...!!!! Now Julie has been having her tubes for 6 years and I had known...!!! If other parents had been able to give me information , I would have done it before !!! This small button on her stomach is not more annoying than a pair of glasses and it is even hidden !!! Besides my daugther feels so much better / no more wrong destinations for her food , no more obstructions , fewer hospitalizations...!!! I know she eats , she was all the vitamins she needs and when she is fine I still have the privilege of feeding her orally which is what she likes. I don't ask myself any more questions to give her medecine , to hydrate her in summer when it's hot ....!!! I regret not to have listened to the doctors when I think of all the comfort it can offer her . I regret to have been so selfish and not to have thought of Julie's well-being ...!!! I used to say very loudly that my only desire was to give Julie a pleasant life and when I refused the G-tubes , I only gave her annoyances . She was getting tired with her obstructions .
I am writing this page in order to help the parents who think like me and only see in this small button a proof of love
. Cathie , Julie's mother (maman de Julie - France )