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Crystal Ferreira
- Female
- Vacaville, CA
- United States
- Blog Posts (4)
- Discussions
- Events
- Photos (10)
- Photo Albums
- Videos
Crystal Ferreira's Page
Latest Activity
"Still trying to wrap my mind around the information provided and the people I met this weekend! Thank you to everyone who made it possible."
"Well, we held our first blood drive and collected 16 pints! We found that most of our donors had never donated before and despite feeling anxious, soon found out it wasn't anything to get worked up about. Can't wait to…"
Linda Burke commented on Crystal Ferreira's event Blood Drive for Christopher Ferreira"Thanks, Crystal ! What a great event that 'gives back' to the your community, as well as raising awareness for blood products. Raising aHUS awareness not only in California, but webwide through Ruth's…"
Blood Drive for Christopher Ferreira at Kids Gone Wild
September 18, 2011 from 10am to 2pm
Together with Blood Centers of the Pacific we will host the first of (hopefully) many blood drives in honor of not just Christopher, but all who have ever needed or will be needing blood products. If you are in our area, we would love to have you stop by. Together we'll save lives!See More
Amy Swarbrick left a comment for Crystal Ferreira"Hi Crystal. Jared and I went to the 2009 conference and it was great. We would really like to go this year but at this time, it doesn't look like we will be able to. I hope you and your husband have a safe trip and get a lot out of the…"
"Hi Amy,
Been a while...will you be going to the conference in October? David and I are looking at flight options, looks like we may be leaving Friday evening. Hope all is well.
Crystal"
"Hi Linda,
Cedar Rapids is only half hour from the University and the flights are slightly more, at least out of California. Des Moines has less expensive options but is one and a half hours away. At least there…"
2011 Parent Conference at University of Iowa
October 7, 2011 at 6pm to October 9, 2011 at 7pm
SAVE THE DATE:The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" . This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:Friday, Oct 7th Early Arrival 7:00pm Meet and Greet Dinner sponsored by the FoundationSaturday, Oct 8th The Confererence at the University of Iowa: (All Meals Provided)Sunday, Oct 9th …See More
Bill Biermann commented on Crystal Ferreira's event 32GB iPad Raffle"All,
If you are afraid to take the plunge and conduct your own Fundraiser, then perhaps you can help out with someone elses! Please contact Crystal for more detailss"
Linda Burke commented on Crystal Ferreira's blog post Support"FAB idea ! I applaud your creativity and effort - best wishes for a terrific fundraiser!"
Support
As this year quickly approaches its final days I think of the support our Foundation families and our immediate families have provided and I thank you. Support comes in all forms from a simple email, hug, or call, to keeping us company when our children are in the hospital. We appreciate the insight we've gained from the Foundation and would now like to return the support. We are hosting a raffle fundraiser (posted on the Events page) with a quick turn around as the prize will make an awesome…See More
32GB iPad Raffle at The Ferreira's
December 10, 2010 at 6pm to December 18, 2010 at 7pm
We are honored to finally be hosting a fundraising raffle for The Foundation. Please see our attached flyer and email me at fourferreiras@att.net if you are interested in purchasing a ticket (or more). All checks are to be made out to the…See More
Profile Information
- Birthday
- February 23
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My membership request involves business interests as I seek additional aHUS information for business applications.
- No
- My child ( or myself as a patient) is best described as:
- Tested but Results are Inconclusive
Crystal Ferreira's Photos
Crystal Ferreira's Blog
Support
As this year quickly approaches its final days I think of the support our Foundation families and our immediate families have provided and I thank you. Support comes in all forms from a simple email, hug, or call, to keeping us company when our children are in the hospital. We appreciate the insight we've gained from the Foundation and would now like to return the support. We are hosting a raffle fundraiser (posted on the Events page) with a quick turn around as the prize will make an…
ContinuePosted on December 10, 2010 at 12:49pm — 1 Comment
Nearing the end of our first relapse
Since I first posted about Christopher's first relapse, his numbers have continued to improve, his spirits have been tremendous and finally an appetite! We were moved out of the ICU this afternoon onto the medical floor and are keeping our fingers crossed that all goes as planned. Chris will be an "add-on" for surgery on Monday to have his PD catheter removed and hopefully will be sent home a few days after that. He came in determined to celebrate his birthday with his favorite nurses and it…
ContinuePosted on February 20, 2010 at 1:30am — 5 Comments
Riding out our first relapse...
As I sit beside Christopher, staring at all the familiar nursing faces, I think back at how little we know about his illness and how we took each day of the past four and a half months one step at a time. As I mentioned in our initial story, the "calm before the storm" was back in December when they took Christopher off his blood pressure medication.
Christopher is now in the midst of his first relapse. He was admitted February 4th, but this time I've felt that we've had the…
ContinuePosted on February 12, 2010 at 7:00pm — 5 Comments
Our first encounter with aHUS
On August 16, 2009 Christopher was admitted to Childrens Hospital Oakland. The hospital setting wasn't unfamiliar to us as we had been visiting my dad for the previous two weeks. Grandpa had been admitted with what the doctors initially thought was diverticolitis, a few days and one exploratory surgery later would soon start our horrible spiral...grandpa had stage IV cancer with an unkown primary.
During our visit (on Aug. 15th) to see my dad I noticed that Christopher didn't…
ContinuePosted on February 12, 2010 at 3:12am — 5 Comments
Comment Wall (7 comments)
- At 3:39am on August 5, 2011, Amy Swarbrick said…
- Hi Crystal. Jared and I went to the 2009 conference and it was great. We would really like to go this year but at this time, it doesn't look like we will be able to. I hope you and your husband have a safe trip and get a lot out of the conference. The best part for us was getting to meet all the other amazing parents that struggle with the same issues we do.
- At 12:17am on April 8, 2010, Amy Swarbrick said…
- We also went to Stanford with Brody for a consult. Don't remember the doctors name? They did some testing our doctors at Kaiser hadn't done and said they would keep an eye on Brody's case, though I haven't heard from them since then. They were leaning more towards TTP but then we got Brody's genetic testing back with a confirmed factor h mutation.
- At 10:08pm on April 6, 2010, Linda Burke said…
- Hope your appointment at Stanford today was productive...we'd be interested in knowing how you made out -hopefully you gained some info/insights.
- At 8:37am on February 13, 2010,
Heather Still said… - Well, I read your relapse update before I read your first encounter story. So sorry for the loss of your father. That had to be so difficult with two of the most important men in your life lying in the hospital. What an emotional nightmare. So glad that you found this site for some support. Will be keeping an eye out for some updates on Christopher. God Bless.
- At 10:54am on February 11, 2010,
Svetlana Finley said… - HI Chrystal, welcome here!! Love your profile picture can't wait to hear your story ;-)
- At 10:29pm on February 10, 2010,
Cheryl Biermann said… - Hi Crystal, welcome! We look forward to hearing your story & hopefully this site will be a comfort to you as well as give you information you are seeking.
- At 10:03pm on February 10, 2010, Linda Burke said…
- Welcome to the interactive website of the Foundation for Children with Atypical HUS, where we share our experiences and support one anothers' journey through issues surrounding this rare disorder. We look forward to hearing about your interest in aHUS.
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 "aHUS Bootcamp" and "About aHUS" tabs 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 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
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.
more factoids...
• • • • • • • • • • • •
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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