O'CATHASAIGH's IN PARIS

Al, Cian, & Ailbhe O'Cathasaigh

By Al & Seandradh O'Cathasaigh

        We have two sons, Cian (born: April 1999) and Ailbhe (born: September 2001). Cian was diagnosed with Cystinosis in April 2001, Ailbhe was diagnosed at birth, five months later. This last year has been a roller-coaster ride of ups and downs as we found ourselves in this horrible new world of constant hospital visits, medications, vomiting, sleepless nights etc.

        Thankfully, our sons have been born in the age of the World Wide Web and it is through this wonderful invention that our lives began to change for the better. We no longer saw that "light at the end of the tunnel" as the "headlamp of the oncoming train"! Communicating with people like Jean Hotz (President of the Cystinosis Foundation USA) and Jonathan Terry (President of the Cystinosis Foundation UK & Éire), who have put us in touch with some fantastic people in the Medical world, all dedicated to finding treatments and a cure for this terrible deteriorating disease has been a truly humbling experience.

        In June this year (2002), we attended the International Cystinosis Congress in Paris, France, where we got the opportunity to meet some of these wonderful people and many of the families who knew just what we had been going through. To be able to share experiences and new information with other families did us the world of good. We met people from all over Europe, America and Australia. Their stories touched our hearts.

        Hearing how different people cope in different ways with "handling" this disease was an eye-opener! We heard ALL the experts stress and stress again not just HOW IMPORTANT but WHY IT IS SO IMPORTANT to administer Cystagon EVERY SIX HOURS AND AT THE OPTIMAL DOSAGE. Now we understand that to compromise this regime in any way is to actually COMPROMISE OUR CHILDRENS' HEALTH! It felt good to hear that by keeping to this regime as we are, that our boys stand an excellent chance of leading normal healthy lives and who knows…they may not require kidney transplant until well into adulthood (if at all!!!)

        To actually meet, talk and listen to people like Drs. Jerry Schneider, William Gahl, William Van't Hoff, Corinne Antignac, Michel Broyer and Researchers like Neil Dalton, Donald Cairns, Samantha Parker (from Orphan Europe) (to name but a few) wasn't a "right" but a real privilage! We hope that by putting into practise their recommendations that we will in the future (by our sons' good health) be able TO SHOW THEM JUST HOW GRATEFUL WE ARE for the wonderful lives they're giving our children by dedicating their own lives to the cause of finding a cure for Cystinosis.

        Dr. Atif Awan, Paediatric Nephrologist from both Temple Street and Crumlin, (Dublin's childrens' hospitals) in Ireland attended the Conference. He was one of the Doctors who diagnosed Cystinosis in Cian. We're delighted to say that after attending, he has suggested to the parents of all his Irish patients (Four families, six children in all) that he would like to set up a "Cystinosis" Clinic. This would be where we would all get the opportunity to meet him (and each other) at the same time every six-twelve months. A fantastic idea…Thank you Atif! As we actually live, in Cork, (about 150 miles away from Dublin), this is a perfect solution for us.

        Cian & Ailbhe normally attend Dr. John McKiernan (Paediatric Consultant) at the Cork University Hospital. Dr. McKiernan and the staff in the Children's ward at CUH have always been very open and approachable, when it came to receiving new information from the Medical World of Cystinosis via e-mail communications between us and the Cystinosis Foundation.

        It is incredible to believe that a condition as rare as Cystinosis has so many dedicated people in so many areas of expertise all working together for the good of our children. Let us all as parents and/or patients show our gratitude to them, by putting into practise what they have shown to be the best possible treatment to prevent the terrible consequences of Cystinosis. Regardless of "how inconvenient" it may sometimes seem to follow the regime let us remind ourselves that the long-term effects of this disease are far far more inconvenient and damaging in our lives.

        Our thanks also to people in France like Francois & Beatrice Couppey, Isabelle Manciet, Ghislaine & Jacques Vignaud and the many others who made the Conference possible. You did a fantastic job putting the Cystinosis Congress together. We are indebted for the love, knowledge and understanding we received by all who attended.


Humbly,

Al & Seandradh O'Cathasaigh,
Co. Cork, Ireland






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