Christian's lifelong battle. Set to Wires by Athlete.
"Sorry all - had to make a change to the video and did not realize it did not remain at the same link.
Gene...
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Gene Billingsley
- Male
- Abita Springs, LA
- United States
- Blog Posts (1)
- Discussions (5)
- Events
- Photos (4)
- Photo Albums
- Videos (2)
Gene Billingsley's Page
Latest Activity
Gene Billingsley posted a videoChristian's lifelong battle. Set to Wires by Athlete.
Christian's Conquest releases it's first video made to the incredible song Wires by Athlete. The video chronicles Christian's 17 year struggle with a terribl...
Linda Burke commented on Gene Billingsley's video
Christian's Story
"Many thanks for adding this, Gene - the news story about Christian's journey with aHUS was both informational and inspirational !"
Gene Billingsley commented on Gene Billingsley's videoChristian's Story
"Hey all - it's been a busy week down here with Mardi Gras! This story was featured two weeks ago and the reporter did a pretty darned good job of summing up 17 years of medical odyssey. Our miracle is your miracle and we as a family are forever…"
Cheryl Biermann commented on Gene Billingsley's blog post Hi everybody!"Wonderful news about Christian! You won't believe the numbers with Soliris on board, we had a longer wait than most for the wonderful numbers but still got out in two weeks! Still can't wrap my head around it!"
Gene Billingsley commented on KaTrina Slaughter's blog post Update - November 2011"KaTrina - have you looked into doing home hemo dialysis? We did overnight PD for our son for many years, then complications forced us back to hemo. We started looking for a home hemo solution and found one from a company called NxStage. If…"
Gene Billingsley posted a blog postHi everybody!
Just popping in to say hello. It's been whirlwind down here in New Orleans this last year. Sorry we missed Iowa - Aida and I would have loved to catch up again.It was real nice visiting in CT - even if it was such a short time together.Christian is doing real well - he has started Soliris as of Nov 2011 and is being worked up for transplant by Texas Children's.Hope everyone is doing well and it's great to see so many stories of progress with this disease.Take care,Gene...See More
Gene Billingsley commented on Cheryl Biermann's blog post Why updating renal patients is always a challenge"We're following you all close and keeping you in our prayers. Always a new wrinkle... I imagine the bladder is like "woah, what's all this!". Hang tight and take care!"
Gene Billingsley commented on Bill Biermann's blog post Cheryl and Nathan's big day"Bill what great and awesome news!!! We are soooo happy for you all and especially little Nathan!
I would joke that donating a kidney is like giving birth, but I think Cheryl's already got an idea about that! lol.
Take care and…"
Gene Billingsley replied to Deborah Deffenbaugh's discussion Soliris and Kidney Transplant"Phyllis,
Yes, we have been going to Houston for clinic. However, our Dr, Dr Goldstein, just left as head of the program and has moved to head up the program in Cincinnati.
This has left us with some interesting decisions to make. At this point we…"
Gene Billingsley replied to Linda Burke's discussion Soliris"Our prayers are with you all Linda! It is so awesome reading everyone's stories this last 12 months as opposed to the last 12 years.
Soliris seems to prove out as our miracle more and more each day.
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Gene Billingsley replied to Deborah Deffenbaugh's discussion Soliris and Kidney Transplant"That's great to hear Deborah. Faith can move mountains - but they don't necessarily move all in one giant chunk. Transplant+Soliris really is an incredible step for our kids. We'll keep praying for full original kidney recovery on top…"
Gene Billingsley commented on Stephen Bradford Burke's blog post My son Hunter Bradford Burke would be 7 years old today."Your comment painted a beautiful picture of a special memory, Steve."
Profile Information
- Birthday
- March 17
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- My child ( or myself as a patient) is best described as:
- Anti-FH-Ab (CFHR1/CFHR3)
Gene Billingsley's Photos
Gene Billingsley's Videos
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Christian's Story
Added by Gene Billingsley
Gene Billingsley's Blog
Hi everybody!
Just popping in to say hello. It's been whirlwind down here in New Orleans this last year. Sorry we missed Iowa - Aida and I would have loved to catch up again.
It was real nice visiting in CT - even if it was such a short time together.
Christian is doing real well - he has started Soliris as of Nov 2011 and is being worked up for transplant by Texas Children's.
Hope everyone is doing well and it's great to see so many stories of progress with…
ContinuePosted on January 6, 2012 at 12:16am — 1 Comment
Comment Wall (4 comments)
- At 8:59am on October 23, 2009,
Gene Billingsley Sr. said… - I'm just proud to be your Dad and Christian's Faw.
- At 5:06pm on July 6, 2009, Linda Burke said…
- Hi Gene!
Just checking in - hope all is well at your end! Linda
- At 11:23pm on June 24, 2009, Linda Burke said…
- Hi Gene,
Looking forward to hearing from you soon- thanks for posting a photo! Linda
- At 1:14pm on June 11, 2009, Linda Burke said…
- Welcome to our friends, met at the December 2007 aHUS parent's conference held at the U of Iowa. Updating you about our status, we lost our sweet boy Hunter at age 5 and a half years this past May, due to an unsuccessful kidney/liver transplant. Ten months after Hunter's death, little brother Skyler was diagnosed with an active case of aHUS. Skyler is doing very well now- we put him on Soliris almost immediately after he presented with aHUS, so lab values are all basically back to normal. How terrific is that! :) Skyler turns 5 on June 28th, and just lost his first tooth last week. We look forward to hearing updates on Christian's story and hope that you find this newly created interactive site both informative and a source of support. Best, Linda
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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