The Foundation for Children with Atypical HUS

Heather Still
  • Female
  • Madison, NY
  • United States
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Latest Activity

Linda Burke commented on Heather Still's event 'Ryan's Hope 2010'
Wow Heather! It's great that your family, friends, and community are coming together again this year at this fun golf tournament to help raise research $$ for The Foundation for Children with Atypical HUS! This is such an amazing annual fundraiser..…
August 17
Heather Still commented on MARCIA AGUALLO BAKER's blog post 'latest Ben update'
Praying for your family.
August 13
Heather Still added an event
Ryan's Hope 2010 at Barker Brook Golf Course
September 25, 2010 from 9am to 6pm
This is our annual fundraiser for the Foundation for Children with Atypical HUS. We have had great success in the past and have raised an average of $10,000 a year for the foundation. Golf is $65 per person, captain & crew teams. Price includes 18 h…
August 13
Heather Still commented on Cheryl Biermann's blog post 'Nathan gains a small victory!'
What great news Cheryl!!!!! Thanks for sharing.
July 31
Heather Still commented on Virginia (jenny) Aguallo's blog post 'My 6yo Grandson, Benjamin'
Your family is in my thoughts and prayers. The feeling of helplessness is so overwhelming. Stay strong and take care.
July 20
Grace left a comment for Heather Still
July 20
Things still going well at 3 1/2 week infusions. Giving one more run at that and then we'll try 4 weeks between :)
July 20
Heather Still commented on lisa ann peterson's blog post 'lil miss chloe hospital stay'
Hoping Chloe continues to improve. GREAT news on the fundraiser :) How fun, love softball tourneys!!!!
July 8
Heather Still added 4 photos
July 7
HOT here in Upstate NY.....not loving the humidity!!!!
July 6
Heather Still commented on Phyllis Ann Talbot's blog post 'Vacation, the 4th, and news!'
All that sounds wonderful and exciting!!!!! Best wishes and keep the great news coming :)
July 6
Sorry I've meen MIA. Busy and fun summer. Going 3 1/2 wks between infusions and labs Monday were pretty good.Have a safe&fun holiday wknd.
June 29
Heather Still commented on Candace Mulcahy's photo 'chloe blood drive'
That picture is priceless. She's like "yay me". I love it.
May 19
Heather Still and Wendy Flinn are now friends
May 18
Heather Still commented on Amy Swarbrick's blog post 'Update on Brody'
Hi Amy. So glad to hear how well Brody is doing. My entire family was tested when Ryan was first diagnosed, but then it was sent to Dr. Remuzzi in Italy as "research" testing so everyone had a number designated to them and no names or info was added…
May 18
Heather Still replied to Christy's discussion 'Recipes'
I somehow missed out on this discussion when it was started months ago!!! We are having the same issues with Ryan. The docs have been no help, but I have been able to make Ryan more "sodium smart". I asked for help through a dietician and all I got…
May 11

Profile Information

Birthday
November 10
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or a researcher with an interest in aHUS issues?
No
My child ( or myself as a patient) is best described as:
Factor H (CFH) Protein(Gene), Factor I (CFI), MCP (MCP)
My name is Heather Still. I have been married to my loving husband, Jim since 1998. We have two children, Ryan and Kayla. Our son, Ryan, has battled Atypical HUS since 2002. He is a very rare case having mutations in MCP, Factor H, and Factor I. Ryan is now 10 years old and still maintains about 50% kidney function. When first diagnosed he needed frequent plasmapheresis in order to slow the attack. After several weeks of daily exchanges we slowly weaned him day by day to biweekly after a couple years. Once his labs remained stable we began plasma infusions. First a few times a week and slowly weaned him to biweekly infusions. We tried to decrease that frequency a couple of times and ended up with strong aHUS activity again. So he has needed biweekly infusions and has remained fairly stable with them for a few years now. He is on 5 blood pressure meds, iron, folic acid, and gets a monthly dose of Aranesp to help him produce RBC's.
I am very excited about this website and look forward to meeting new families and helping each other through our daily struggles. I have been an active member of the Foundation for Children with Atypical HUS since Ryan's diagnosis. My family does an annual fundraiser earning $10K-$13K each year. For the last 4 years it has been a golf tournament. The money we earn is just a small piece of the foundation which funds genetic testing and research.
I am always readily available to answer questions, share information, and just listen if anyone needs help fighting this battle. It's never been easy, but as a mom I do what I have to in order to help Ryan win his battle.

Heather Still's Photos

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Heather Still's Blog

Heather Still

A child's perspective

Tonight is the eve of Ryan's 11th birthday. I go in his room as I do every night to tuck him in and I say "You know, it was about this time of night that you told me you were ready to come out of my belly and into the world." He hides his head and says "Yeah, that was before all of this." I asked him what he meant. He said "Before all of this." and pointed to all the scars on his chest and belly from catheters and g-tubes. Of course the tears were welling in my eyes already. So I explained th

… Continue

Posted on April 21, 2010 at 10:30pm — 5 Comments

Heather Still

BP been trending upward

Well, hopefully no big deal, but the past week or so Ryan's bp has been slowly trending upward. He usually runs 110/70 ish. Been running 120/80's and a few times including tonight he's 130/90. Doctor seems to be thinking that it may be part of a growth spurt and increase in appetite. God knows he's 10 and doesn't ever want any food that's actually good for him, the saltier the food, the happier he is. Guess I gotta start buckling down more on that. So, we're increasing a bp med and going to do a… Continue

Posted on March 23, 2010 at 10:04pm — 11 Comments

Heather Still

Creating a better hospital experience

It's been a year now since we've had a inpatient stay with Ryan. I try not to say that out loud because I think it's bad luck, but I guess typing is really not out loud. For the past few weeks I have been following what I believe is the first patient since Ryan at our Children's Hospital with an Atypical HUS diagnosis. While reading updates on this little beauty's status I am quickly reminded of all the horrors that accompany the initial diagnosis. Not only the questions about the illness, bu

… Continue

Posted on February 18, 2010 at 9:17am — 5 Comments

Heather Still

Copy of email from Bill Biermann (foundation director) looking for final counts for Fall Conference planning.

Hello All,

I hope all is quiet, and back to school for many of you.

Right now, I have 16 parents who have expressed a ‘strong’ desire to attend our Oct 17th conference. Just to reiterate the details, October 16 (Friday) is early arrival time, and the Foundation would sponsor a late dinner, around 7pm, at a nearby restaurant. On Saturday, we would start our conference at 8:30. We will finish up the day at around 4pm. The Foundation would supply continental Breakfast, lunch would be brought in,… Continue

Posted on August 26, 2009 at 8:07am — 30 Comments

Heather Still

Infusion Today

Ryan woke up and said he's dizzy and has a headache. I'm hoping it's just the Monday blues and he was coming up with excuses to not go to school. He has an infusion scheduled for this afternoon, so I will have his lab's to see if there is anything funky going on.

Posted on June 8, 2009 at 10:23am — 2 Comments

Comment Wall (43 comments)

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At 8:20pm on July 20, 2010, Grace said…
Hooray for 3.5 weeks and almost four! Wishing Ryan a healthy, happy summer and beyond! (You, too!)
At 7:47pm on April 26, 2010, Linda Burke said…
Wow....great news! Do your docs run a c5 complement level or functional assays (or another test) of any sort to help determine how/when to space out Ryan's infusions? How'd the big family dinner go for the Birthday Boy? Hope Ryan was pleased....many happy returns for the R-man!
At 4:24pm on April 22, 2010, Joey Krug said…
He is 10 yrs. Old.
At 11:07pm on April 19, 2010, Linda Burke said…
Hoping that things will quiet down soon for y'all - it's been a bumpy past few weeks for Ryan. Sending a hug, Linda
At 9:54pm on April 9, 2010, Linda Burke said…
Just checking in to see how Ryan's echo went today - hope all is good news!
At 7:50pm on March 30, 2010, Linda Burke said…
I've asked Christy White to take a look, those flags seem just present for administartors. Strangely, it's hard to find an 'off' button when we're not sure what got turned on (or how)! I'm concerned that new blogs will be 'frozen' for our comments, too - strange and perplexing..... I'll let you know if I can figure anything out.
At 10:00pm on March 6, 2010, Linda Burke said…
Please give Chloe and family our best wishes. Thanks for turning out for their fundraiser to offer support- you're the best!
At 3:34pm on March 4, 2010, Colette Ann Frysz said…
Heather,
I contacted our coordinator and asked her to give me web sites she would suggest for you to get info on starting an advisory courncil. She gave me the following:
The Institure for Family Centered Care www.familycenteredcare.org , www.cincinnattichildren's.org . she said that you could google other hospitals for their websites and she suggested Children's Hospital of Philadelphia,Morgan Stanley Children's Hospital of New York - Presbyterian, The University of Colorado Hospital in Aurora Colorado and of course she gave you the site for Cincinnati Children's. That should get you started in your quest. I will pull hard copies I have of info and send them to you next week.
At 11:19am on February 15, 2010, Svetlana Finley said…
Praying everything goes well and Ry gets better FAST!!!!
At 9:36am on February 10, 2010, Colette Ann Frysz said…
Heather,
I just wanted to congratulate you on all your efforts from your golf fundraiser. You have a God given talent that not everyone can share. I'd like to commend you for that and for sharing it with others.

I hope all is well with you and your family. I hope the winter hasn[t been too harsh there.

View All Comments

 
 
 
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

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.

NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2010 genetic testing and treatment.

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.
  
• • • • • • • • • • • •
  
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.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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