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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!

Jan 6

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…

Jan 6

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 this disease.Take care,Gene...See More

Blog post by Gene Billingsley Jan 6

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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!

Sep 7, 2011

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…

Sep 6, 2011

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…

May 30, 2010

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.

May 26, 2010

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…

May 26, 2010

Jooste Vermeulen and Gene Billingsley are now friends Mar 10, 2010

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.

Nov 9, 2009

Gene Billingsley commented on Sara Palmer's blog post 'My Son Jack is 9 Today - 6 November 2009'

Mighty prayers out to you strong, loving mothers and your families.

Nov 9, 2009

Gene Billingsley Sr. left a comment for Gene Billingsley

I'm just proud to be your Dad and Christian's Faw.

Oct 23, 2009

Gene Billingsley left a comment for Gene Billingsley Sr.

Hi Faw!! I'm so excited to see you on the website. We love you!

Oct 22, 2009

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Photos posted by Gene Billingsley Oct 22, 2009

Gene Billingsley commented on Gene Billingsley's photo

Thanks for the comments! This was a very special Mardi Gras - Christian had just gone through the horrible post-Katrina odyssey where he ended up in Memphis Le Bonheur Children's Hospital from Sep'05 - Christmas weekend '05. This was…

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Oct 22, 2009

Phyllis Ann Talbot commented on Gene Billingsley's photo

Beautiful family!! It was so great to meet you both Gene and Aida! I know Bill enjoyed picking your brain about long term dialysis - thanks so much for being so kind and forthcoming - also helps give some of us 'newbies' hope! Bill and…

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Oct 22, 2009

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)

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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…

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Posted on January 6, 2012 at 12:16am — 1 Comment

Comment Wall (4 comments)

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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

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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 2011 genetic testing and treatment.

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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.

• • • • • • • • • • • •

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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