Hello Everyone Its been a while since I have been on the Site, got through another Christmas, the 3rd without Jack and now I am into my 3rd Year of life without him. I hope everyone had an enjoyable…

[Sara Palmer]

Hello Everyone

Its been a while since I have been on the Site, got through another Christmas, the 3rd without Jack and now I am into my 3rd Year of life without him. I hope everyone had an enjoyable Christmas and I hope that 2010 brings some peace and hope for more insight and answers/treatments for aHUS. I bumbled through Xmas and New Year in a numb state, no tears like the previous couple of years, just the state of mind do what I need to do, what I can do and then get the hell out the other side as quick as possible. Its good to read but also painful (for me on a personal level) that some kiddies are so much improved and even had lines removed, treatments are now wide spread and families are breathing again, I fight with myself though why in the 18 months Jack had aHUS he was never well enough to even consider removing his line and could never go more than a week without treatment, I guess hard as it is I have to accept that there must be various strengths/strains/mutations of this dreadful disease and he had the Mother of them. Dont get me wrong I would never wish losing their child to this on anyone but I am sure you can all appreciate where I am coming from - just wish he had had a chance at life too.

Sending you all hugs from the cold UK x

[Jessica Olivia Frysz]

I may not understand what it's like to be a mom, or for that matter losing a child to a life-threatening illness, but I have lost friends to certain diseases, and kidney disease has been the mian one. I understand though where you are coming from, from a patient's point of view about other families having "all the glory" that their kid is getting better compared to your own. I once fell deep in frustration and depression at one point when I was at my other dialysis unit. While all the other kids before me have gotten transplants, I was still on a dialysis machine, watching all the other kids being able to have what I call their freedom, being able to eat and drink what they want, and most of all go traveling without worrying about scheduling dialysis treatments elsewhere-the one thing I most desire now. I still have that frustration and once in a while I slip into depression, wondering whether or not I will have that chance, it hurts my mom very much not being able to donate to me, because of the Factor H mutation. But, I know she would if she could. But, I just have to wait until the right plan comes along, once my transplant work up is over, I will know more facts, but for now I'm doing what ever aHUS patient is doing, waiting, waiting, waiting.

[Amy Swarbrick]

I think everyone can see where you are coming from. I feel something like that every day when I look at healthy kids playing at the park or at school or in the grocery store, ect. I think why are they so happy go lucky healthy and Brody has this damn mutation that no one has ever heard of. Will Brody ever play football like them, have a girlfriend, get married, have children? Not that I would ever want to wish this horrible disease on anyone either but why our kids? The only thing that keeps me from going insane from the "it's not fairs" is the thankfulness I have to be Brody's mother. I wouldn't trade him for any other healthy kid in the world. I just think we must have been some amazing souls in Heaven to be chosen to be the mothers of such incredible children. It's heartbreaking that you lost Jack and we all love you for having the strength you do and for sharing with us all. You are Jack's mother for a reason and God knew that even with Jack being sick, you would be the very best mother for him and you would do an amazing job.

[Linda Burke]

As mothers who have lost a cherished child, all we can do is celebrate the wonderful- though all too brief- time we had with our lovely boys....it is sad, of course! I'd like to think that every time I go sledding with Skyler, making cookies, reading books together and so forth, that I build magic moments with Skyler that sustain and heal us both. Through troubled sleep and waves of 'if onlys', I move through through the grief to slowly,thoughtfully piece together an artglass window with the shards of my broken self/life - trying to create a new world view through my 'Broken Window'.

[Cheryl Biermann]

AMEN! We love you. Hang in there.