Unbelievable news...

Well the power of the internet is an amazing thing. Recently we received several inquiries from potential "living donors" who have asked to be screened as a potential match for Christian. These are complete strangers who have a desire to give of themselves so as to better our son Christian's life. Words cannot describe the emotions that, possibly, someone may match and be a willing donor.

There are many, many factors in possibly getting from here (dialysis) to there (healthy donated kidney) and we have been well coached throughout the process from our support team at Texas Children's and home. Whatever the outcomes, we are grateful.

A quick update on the fundraiser - things have gotten off to a great start. We have had a wonderful response and have received many offers of help for auction items, parade of raffle items and general help. Please do not hesitate to contact Michael Billingsley direct or myself if you have any questions. I'll update the Kidney Kickoff page as Michael and the crew continue to put things together.

Fundraiser Announcement - Kidney Kickoff! Aug 26th 2012

Save the Date! Come join us August 26th for the Christian's Conquest Kidney Kickoff being held on the shores of beautiful Lake Pontchartrain at the Pontchartrain Yacht Club.

Raising funds and celebrating the incredible news of Christian's placement on the kidney transplant list, this fundraising event will feature a silent auction of exciting and useful items and services from local businesses as well as a Celebrity Raffle for a pair of 2012 LSU Season tickets in Sec 304 of Tiger Stadium!

In addition to the main event rooms, the fundraiser is being built as a family affair. For the Kickoff Kid's, there is a park located directly across the street for family fun and activities like face painting will be available.

Food, a cash bar and musical entertainment will be provided.

Event tickets are $40 Adults, $10 Teens (13-18) and kids 12 and under free.

For a quick catch-up on Christian's 17 year medical journey, see the following two videos:

WWL TV Feature: Keep Him Alive Until Medical Science Catches Up

Christian's Medical Journey Video

Check back often as we will update Christian's Conquest with news and enhancements over the next several weeks.

The event coordinator is Mike Billingsley. Please contact Mike for donations, volunteering, thoughts, ideas and even just plain encouragement!

Kiki's Dad

Approved!!!

Well, what a JOY it is to finally announce that Christian is now officially and formally approved for transplant and ON THE LIST for a new kidney!

What an unbelievable feeling this is for our family. Certainly this is the beginning of a new phase for Christian and us and we know it comes with it's own new set of problems and issues, but man it sure is hard to hold down the euphoria around the Billingsley household right now.

At this point there are two options: 1) We are on the list for a donated cadaver kidney, or 2) We are approved for a "Living Unrelated" donor kidney.

Please keep Christian in your prayers that a potential living donor emerges. There are several benefits to a living unrelated donor, and in this day and age we are seeing miracles happen all over the place along these lines.

FYI, there are 3 criteria for a "Living Unrelated" donor:

1- They must not be related to our immediate family (due to the suspected genetic origin of his disease),

2- They must be type B or O blood, either positive or negative,

3- They must be in general good health (no high blood pressure, other risks, etc)

I told Christian he wants BO but I don't think he got the joke at first. Heh, anyway, we'll have several more announcements in the coming weeks, but please begin to pass the word around.

Check back soon for more info! Thanks!

Kiki's Dad

Getting closer...

We found out today that Christian has cleared the Medical Review Board at Texas Children's Hospital and is getting close to full approval to go on the transplant list.

There are several logistical items to work out and a post-transplant treatment protocol that Dr S needs to complete before he can officially be "on the list".

Things that need to be worked out include emergency transportation to TCH, arrangements for the family for the immediate surgery, arrangements for a 2-3 month stay in Houston following surgery, follow-up visits, etc. And that is before we get to anything having to do with his treatment protocol (ie, med schedules, testing schedules, etc).

Things look like they will start moving quickly now until formal approval and then.....we wait.

Already having been in end stage renal disease for many years, we believe that Christian could be rather high up on the transplant list once he's there. What an exciting time.

Take care,

Kiki's Dad

6 Month Milestone for Soliris

Well today is a pretty special day. Today marks the 6 month anniversary that Christian has been on his new miracle drug, Soliris.

We have been going to Houston every other week for the infusions and have experienced no setbacks and no side-effects.

Workups for to be placed on the transplant list are ongoing and we expect an announcement in the coming weeks on that front. This truly is a miracle time in the lifelong struggle Christian has fought against this devastating disease.

To look back and see where we were vs where we are today - on the cusp of a transplant and all of the benefits Christian can realize by getting it at this time - it is pretty amazing.

Thanks for all of your kind thoughts and prayers.

Take care,

Kiki's Dad