Tony’s Story Hi my name is Tony Bayard; I am 23 years old and have just graduated with a Bachelor of Information Technology. I was diagnosed with DC (Dyskeratosis Congenita) earlier last year after my younger brother Aaron aged 18 was diagnosed with this. The test was taken just before he died in February 2011. Aaron died from an unusual infection due to complications of bone marrow failure. We are the first two diagnosed in N.Z with this condition. Since May 2011 I have developed paralysis and spasticity in my hips and legs, this leaving me unable to drive my car and having trouble walking. Nelson Drs are not sure why this has happened and how to treat it, but believe it is connected to D.C. It is progressing and getting worse. The latest MRI and X-ray scans over the Christmas period showed a cyst in my spine. We are waiting for the neurosurgeon in Auckland to look at this. It also showed abnormalities in my hips now and the femur has no cartilage left, it has collapsed and the blood supply has died off. My specialist has asked if there is any way of my family being able to financially get me to Boston to seek medical treatment for a very rare bone marrow and blood disease I have. I can get free consultations from a number of different specialists but any tests, treatments, airfares and accommodation will cost money. I have two rare conditions called Kartageners and Dyskeratosis Congenita (DC). I was diagnosed with Kartageners after the first year of life and was the first one diagnosed in NZ. This condition means that all my internal organs are reversed. I have to do physio twice daily and regular exercise to drain my lungs to prevent chest infections. Aaron was also diagnosed with Kartageners at birth. DC affects the bone marrow and various other parts of the body. This disease is called an orphan disease (rare disease) and the Drs at Harvard medical school are in the midst of doing a five year research on DC. A Dr in Boston at Harvard Medical School became interested when he heard about my unexplained paralysis. He has organised a team of specialists at Boston’s Children’s Hospital that are willing to assess me and come up with a plan for my future and any treatments needed. I have had a bone marrow biopsy and so far my bone marrow is bordering ok and Drs have done a test to see if they can find a bone marrow donor for me in the future if it is needed as they couldn’t find a donor match for Aaron. The Drs here and in Boston want to be two steps a head in treatment with me. With Aaron through no fault of the Drs, we were always two steps behind him in trying to keep up with his treatments. N.Z Drs are wonderful but they have said that DC is very rare and they are struggling to come up with the answers to a lot of what is happening to me and what to put in place for the future. They think that it would be great for me to be able to go to Boston and see the specialists that are dealing with DC and have seen other patients with D.C. Thanks Tony Bayard Leave a Reply Cancel replyYou must be logged in to post a comment.