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Cystinosis stories
My name is Denis and I'm father to two amazing kids with cystinosis aged 7 and 4.
Views: 619 Dec 30, 2015, 3:59 PM by denis o sullivan
Kim is my doughter...she's 10 and she was diagnostic when was 10 months old.... we Live in a small village between the Alps, near the boundaries of Austria and Slovenia.
She is a very strong girl, she is a fighter..... She is not very tall and...
Views: 553 Dec 31, 2015, 7:16 AM by Kimberly
My brother Andrew, 12, was diagnosed with Cystinosis in 2005 when he was one years old. my family is from Calgary, Alberta, Canada.
I am involved with the Cystinosis Research Foundation community (USA), C.A.R.E. - Cystinosis Awareness Research...
Views: 545 Jan 3, 2016, 11:33 AM by Kelsey
My 12 year old son Caleb has cystinosis.
Views: 522 Mar 19, 2016, 7:29 AM by Jana
My 2 daughters Alix ( born in 2016) and Helga (born in 2017) have cystinosis. They are threated in Robert Debré (Paris) and are both with Cystagon.
Views: 325 Jul 28, 2017, 5:28 PM by Hélène
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