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Kortnee Fornetti
- Female
- Kingsford, MI
- United States
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Kortnee Fornetti's Page
Latest Activity
Hi Heather! Kaleb stayed at the Childrens Hospital of Wisconsin and they had so many great programs for the kids there. They also had a Family Resource Center with literature and information about diseases and other medical information. They were ju…
The world's greatest caregivers - a loving Mom and Dad !
Hi Kortnee, I wish we could meet under different circumstances, but thank you for sharing your story. It is a trait of a parent with aHUS to be constantly on edge, (that's what other people call it, we call it vigilance!), and it is what Kaleb needs…
Sorry to hear about Kaleb. Glad you found the sight though and hope you can find friendship and support here. We are all either going through the same things or have been through the same things with our own kiddos so don't feel alone. Hope everthin…
Hi Kortnee,
You have wonderful family, thanks for your story like Linda saying we all went thru scary time at beginning specially not knowing anything about it. I am glad u are home and doing well. I learn at home i have to watch Anna and if any lit…
Nick, Kortnee and Kaleb
Profile Information
- Birthday
- May 1
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- My child ( or myself as a patient) is best described as:
- Tested but Awaiting Results
Kortnee Fornetti's Photos
Kortnee Fornetti's Blog
Our Story
Hi!
My name is Kortnee and my son, Kaleb, who will be 3 in April, was diagnosed with aHUS just 3 weeks ago. It's been a whirlwind experience! We began bringing him into the pediatrician about 4 weeks ago with, what I thought was, pink eye. The eye infection did not go away after a week of antibiotic ointment so I brought him in again. This time he had an ear infection on top of the eye infection.
By that evening he began vomiting. I brought him in… Continue
Posted on February 9, 2010 at 12:00am — 4 Comments
Comment Wall (6 comments)
- At 9:41am on February 9, 2010,
Heather Still said…
- Thanks for sharing Kaleb's story. He's a handsome little man!!! You have every reason to be overprotective, especially in the early stage. I am still jumpy when Ryan gets the least bit sick and he's been diagnosed for almost 8 years now. I truly believe that my jumpiness is what has kept his kidneys hanging on for this long. I think that diligence with extra plasma therapy the instant his labs fluctuate has made a huge difference in his success. He currently gets plasma infusion biweekly and I don't think we'll try to decrease that frequency. We did once and he had an active episode again and ended up damaging his kidneys a little more, so now we're afraid to do it again.
That's the shortest version of our story I can give. Looking forward to updates throughout your journey.
- At 7:43pm on February 8, 2010,
Svetlana Finley said…
- Welcome here, your little one is so cute, love his picture!! Can't wait to get to know you and your family, keep us updated.
- At 6:28pm on February 8, 2010,
Heather Still said…
- Welcome to this wonderful site. I hope you have had a chance to look through all of the great information families have shared here and am looking forward to hearing more about you and your family.
- At 6:25pm on February 8, 2010,
Cheryl Biermann said… - Oh, he's so cute!
- At 11:33am on February 8, 2010,
Linda Burke said…
- Hi Kortnee,
Thanks for joining this site, a place to share information, inspiration, and insight into this rare disease. The Foundation for Children with Atypical HUS welcomes your participation through comments and/or questions in the various Forum interest areas or in members' blogs. Please let us know if there's a specific aHUS issue or concern you'd like to explore.
- At 11:32pm on February 4, 2010,
Cheryl Biermann said…
- Hi, welcome to our interactive site, as you can see, we have a lot of information here, but if you are new to this, a good place to start would be the drop down tab, from a parent's perspective and also the static informational site-www.atypicalhus@50megs.com. Please feel free to jump right in, we are glad you found us.
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.
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...
• • • • • • • • • • • •
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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