The Foundation for Children with Atypical HUS

Snowdrops - The Bravest Little Flowers

Spring is a time for those brave little flowers to make their appearance and poke their heads out into this world. We have had the coldest Winter in the UK for 30 years and more Snow is due this week, we are just not used to it and the UK goes into turmoil and everything stops!

When the turf went down on Jacks Grave lots of Snowdrop bulbs were planted, I have always loved Snowdrops and for those few weeks that their little white heads are on show it makes me smile. This will be the second year they have made their appearance and they are just starting to show.

I related the braveness of these beautiful flowers to the bravery of Jack and all the other kids with aHUS and as the years go by these flowers will multiply every year and I am sure in many years to come when I am with my Son these Snowdrops will be all over the Churchyard and we will both look down and smile together xxx

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Comment by Sara Palmer on February 10, 2010 at 3:05pm
I like all the hugs you guys send! we all have had our hopes and dreams dashed by aHUS and yet you guys are some of the nicest people out there who have amazing strength and determination and enough fight to be in a ring every week:) Sometimes I dont know what is worse - fighting or not fighting but then I know those decisions are sometimes taken out of our hands and the cards are dealt. I was once like you guys, now I am something different but I so admire you all. aHUS binds us whatever it brings to each and every one of us, keep on fighting that fight:)x
Comment by Colette Ann Frysz on February 10, 2010 at 9:13am
It has been a colder than normal February here in Western New York but the hope of spring is in the air with the length of the days being longer. It seems to be more visible to more people this year. Sometimes hope for spring is all that gets you through the day. I'm sure your son is looking down on those flowers and smiling along with you. The bravery of your son came from the bravery of his mom.
Comment by Cheryl Biermann on February 8, 2010 at 5:41pm
It may be cold and white in the UK and dreary and gray with sloppy wet snow here in Missouri, but the thought of your brave Jack and those fiesty little snowdrops have brightened my day. Hugs.
Comment by Linda Burke on February 8, 2010 at 2:40pm
Sending you a big hug from snowy Maine!

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The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


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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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
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