Sara Palmer's Page

I have been keeping a close eye on this website for a while now, wondering if I should join and after a little prompt from Linda I decided yes I would. My reservations were I lost my little boy to aHUS in August 2007 and I thought that maybe that would not be accepting by those fighting tooth and nail to stay positive every day, you guys dont want to hear that it has claimed another life but sadly as both Linda and myself know it does, so I hope no-one objects:)

I so wish this site had been up and running when Jack was diagnosed, here in the UK very little is known about this syndrome and the doctors are mystified as cases are so rare, however from reading all your stories about your children I know that Jack received the right treatment which pleases me. You so need a lifeline when you get the diagnosis, someone to cling to for dear life that has all the answers, someone to support you who is living through the same nightmare, but you are pretty much on your own doing your own research in the dark world of aHUS but you guys all have each other to share things with and get that support you so need (thanks to Linda).

Jack was diagnosed with aHUS just before his 5th Birthday, prior to that there was no signs he was not a healthy young boy. It came like a bolt from the blue and turned our normal lives upside down. He spent many weeks in a specialist childrens kidney unit which became our second home and the people in it our extended family. From what I have read the onset symptoms are much the same for all the children and Jack followed that pattern. He was treated with FFP initially 3 times a week and when it attacked again it was back to every day until it had subsided, we only ever got down to once a week and never was he in a position to have his central line removed, he relied on his treatment. Like you all we had some hairy times with dark days, long stays in hospital, times when he needed ventilating to give his little body a rest, endless meds, constant worry and terrible sickness, in-between those times when he was well he was `normal` lived a full, happy and active life.

In July 2007 Jack developed a fever which put him back in hospital, it all happened so quickly, he had a bacilius bacteria on his central line which had caused Sepsis, he had two seizures and went into a coma. Over the next two weeks brain swelling had resulted in total damage and the fight was just too big. We said goodbye to Jack at 2pm on August 14th 2007 Aged 6.

Please dont panic about the central lines, I know many children who have infection after infection and they fight it and everything is fine, Jack just could not fight this particular strain of the bug, ultimately now I am grateful that his central line enabled him to live his life but inevitably it led to his death.

What can I say, I miss him so very much every second of every day and part of me died too (Linda you will feel this I know) but Jack has a Sister Maisie, now aged 7 and he lives on in her. I dont know if she has the defective gene, I decided that I would cross that bridge if she displayed symptoms and so far so good.

I feel the pain for you all going through this but you all sound very brave and will fight for your children, just because Jack has gone I have not stopped that fight, Jack and aHUS will never leave my life ever.