The Atypical HUS Foundation

My Son Jack is 9 Today - 6 November 2009

If losing a child is not bad enough on its own, their ongoing birthdays deliver a searing pain of there own knowing that you can only imagine what they would look/be like and that happy event takes on a total new meaning of yet another reminder of your loss.

We continue to celebrate Jacks Birthday - just without him. I lay 9 Red Roses at his Grave and send all my love to Heaven knowing that one day I wont have to let him go again.

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Comment by Sara Palmer on November 9, 2009 at 12:59pm
Its about all I have Cheryl, funny that I retained that when my life fell to bits!
Comment by Cheryl Biermann on November 9, 2009 at 12:56pm
You do have a sense of humor!
Comment by Sara Palmer on November 9, 2009 at 10:30am
No we dont but we have lots of Road Rage!!
Comment by Cheryl Biermann on November 9, 2009 at 10:15am
Oh boy, do I hear you about the petty problems! The UK is not alone in the world of drunk driving, my sister's car was literally driven on top of by a Ford F-10 pick-up truck when she was in high school, she's lucky to be alive. Do you have Mothers Against Drunk Driving in the UK-MADD?
Comment by Sara Palmer on November 9, 2009 at 2:54am
A Ward Clerk - sure you have a completely different use of words in the US than we do here - sorry!! its someone who deals with those who have suffered trauma's relatives when they arrive and basically an Admin role and yes the Bones Ward is Ortho! Here in the UK we get alot of people under the influence who end up with trauma to their bones maybe after a fight or a fall plus there are those that require the worn out bits to be replaced! Its a totally new learning subject for me but its not children, blood or kidneys so I hope I can cope! A few years ago I would of laughed if someone told me I would be working in a hospital but after virtually living their for 18 months its not such a scary place now, I used to have a brilliant career in Human Resources but after Jack died so did my motivation for a fast paced career and dealing with other peoples petty problems was going to cause me to blow a gasket, since then I have 2 jobs, this will be my 3rd, I am hoping I can avoid the breakdowns and depression this time to keep it going!!x
Comment by Gene Billingsley on November 9, 2009 at 12:32am
Mighty prayers out to you strong, loving mothers and your families.
Comment by Cheryl Biermann on November 8, 2009 at 10:50pm
Sara, I hope you received my message, but one thing I neglected to ask, what the heck is a Ward Clerk? Also is the Bones Ward, orthopedic? That line about your job made me laugh. You are so poetic! It looks like Maisie is too.
Comment by Sara Palmer on November 8, 2009 at 1:44pm
Cheryl - thank you, when I ask why didnt we have more time I answer we did, we had 18 months from diagnosis until he died, now that 18 months in itself was at times enough to stop you breathing but he always fought his way out of it, guess I thought he would so the same this time. I feel far from strong, but I think we all under estimate our strength, I just feel constantly sad and empty, even though I can laugh and smile again with Maisie part of me has gone forever. I have just got myself a new job funnily enough in a Hospital, not the one Jack was in though! I have not worked for the last 5 months, mentally I have taken a battering and had a long hard struggle to cope with a bad patch of depression, I appear to be out the other side now but for how long is anyones guess. I am going to work as a Ward Clerk on the `Bones` Ward, just part time, I still feel the need to care for people and help others. We also got a Puppy called Ruby a Cocker Spaniel who is now 5 months, we had her from 8 weeks old and she has brought laughter and love back to Maisie and lots of cuddles for me. Maisie thinks Jack has come back in Ruby (bless her!), I liked the idea of a Dog better than getting a fella! mainly because they dont talk but seem to understand your emotions (my relationship with the childrens Dad ended 3 months after Jack died). I will always fly the flag for aHUS, as much as I hate its effects on our little ones x
Comment by Cheryl Biermann on November 8, 2009 at 12:56pm
Sara, I know you cannot help but think of the bumbling that led to the late diagnosis of Jack's illness, but please know that if it were not for your constant vigiliance and determination, you would have lost him much sooner, I thank God you were so pro-active, it allowed your family more time together. Your little saint in heaven was a blessing to us all, I'm so glad we have had the chance to "know" Jack and your beautiful family. It is not many who would have the strength to regularly submit themselves to the other sometimes tragic and sometimes troubling lives of others who struggle with this disease, We need to thank YOU for your devotion, and know that you are doing all you can in the UK to better the lives of others and spread the news about this disease, so thank you.
Comment by Teresa G. Craig on November 8, 2009 at 6:45am
My heart goes out to you! Hunter and Skyler's Auntie Terry.

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

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