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From: Hamilton

My Story

Brendan

Brendan Judd  -  HANDS UP FOR RARE DISEASE DAY

Brendan Judd has learned to live with his rare and still undiagnosed condition. He has had to deal with many admissions to hospital and immunoglobulin therapy. However, thanks to that immunoglobulin, Brendan is able to live a relatively normal life and has even decided to give back by raising money for KIDS Foundation. This is his story.

“My blood is funny.” These simple words can in no way really explain what 11-year-old Brendan Judd has been through. He has lived with acute myelofibrosis since he was eight months old. Although there is a name for this symptom, the root cause of his illness is still undiagnosed.

Brendan’s immunity is compromised, his bone marrow is degrading, and under a microscope it looks like a bite has been taken out of his blood cells, instead of the cells having their regular donut shape. He suffered years of admissions into hospital due to infections and other illnesses we take for granted our immune systems will fight until, at three years old, he started treatments derived from blood plasma donated to the New Zealand blood service. These have been keeping Brendan healthy and able to live normally. He hasn’t had an admission to hospital since he started the immunoglobulin that is made with the plasma donated and is able to do all the things he loves, such as play soccer and go to school.

Because his doctors have still not been able to put a name or cause to what is happening to Brendan’s blood, his genetics, marrow and the genetics of his parents have been sent to the United States for further testing. A deformity has been found and his genetic material is now being tested further.

Brendan is the rarest of the rare. As far as he, his family, and his doctors know he is the only one in the world with this illness. As such this can be quite isolating. His mum, Rachel believes that although this makes him special and unique, it is also lonely having no one who understands completely what he is going through.

Although the family have some answers, Brendan’s story is not complete and, as is sometimes the case, it has taken years for the Judd family to get the few answers they do have. It has been an uphill battle for them to even put a name to part of what Brendan has to deal with daily.

However, despite not knowing what the cause of Brendan’s illness is and living with the fact that it is potentially terminal, the Judds have never held Brendan back from doing the things he loves. Only a few years ago this bright young boy decided to give back and ran the Round the Bridges marathon in Hamilton at nine years old. He raised an amazing amount of money for IDFNZ KIDS Foundation (over $1000) and inspired a close friend to do the same.

Brendan has never let his illness define him or bring him down and has decided to instead fight to live the best life he can. Despite having a rare disease and very few answers to why he is the way he is, he has inspired others and keeps moving forward.

Brendan, you are one of a kind and we thank you for putting your hands up for rare disease day.