31 Years Ago
Written by Christine, published 2 months ago.
The mother of a young woman suffering from cystinosis...
31 years ago I had the good fortune of giving birth to my first daughter, the most beautiful girl in the world, to me! A year later I found out the cause of her growth retardation of 6 months and the adventure began.
The same problem that all children that suffer from this ailment have, frequent ear infections, led us to visit doctors and hospitals regularly. It was an environment I knew well, since I was a nurse! We have learned to live one day at a time, rejoicing in the good times and gritting our teeth during hard times.
It has been hard to live with sleep cut short. Waking up at midnight and at 4am to give her the medication or to put her on the potty when you have to work and when her younger sister also has needs hasn't always been easy.
We have learned to know her illness, we have encountered the cystinosis foundation and a lot of helpers. The tests have continued, we've been surrounded always by friendship and we love ourselves a lot.
AC is now a young married woman with her own questions, joys and pains. She is on dialysis and we hope she will not have to wait too long for her 3rd transplant and that she will receive help in her daily life, because she works many hours and get tired traveling and waiting at the dialysis center.
She has founded a French association and a French internet website and she is online with many other young people around the world. Together we feel much stronger!
Written by Christine, published 2 months ago.
