Christian and his Sr Classmates! Thanks to all for supporting Christian and Rare Disease Day!
Friday, February 28, 2014
Thursday, May 16, 2013
A little more urgency...
Well, Christian just returned from a 5 day trip to Texas Children's resulting from complications with his fistula. We have been experiencing difficulty in accessing his fistula for dialysis and it came to a head last Friday when we could not access it for the third day in a row.
His "lifeline", this fistula in his arm, is failing. And while another can be created, there are issues in going down that road that have both short term and long term serious affects on his long term prognosis. If he would be blessed with a donor kidney instead, it would be a significantly better path for him.
If you would, please talk up Christian's need for a donor kidney. A donor emerging in the next 2-3 months could be huge for him.
In addition to the fistula failing, we also got word that Christian's bone plates appear to be only months away from fusing. This is very difficult news to take for me, since I have always held out hope that a miracle would be found and Christian could grow to a full adult size and have significant bone healing and CNS healing.
The hope for that was in my heart 17 years ago, when we had our first "long term prognosis" meeting with Dr's at Arkansas Children's Hospital. While they were talking about Christian not surviving past 5-10 years, all I had in my heart was peace. When Soliris, the miracle drug that allows him a transplant, was trialed and approved 2 years ago, I could not believe that this hope I held all these years may be coming true.
If you have anyone inquire, the initial screening process is easy. It is a simple blood test that can be performed at any clinic anywhere.
Direct match donors can be B+, B-, O+ and O-. There is also a "chain donation" network that can allow a donor of any bloodtype to start a chain of donations that result in a kidney directly for Christian. It's pretty amazing what is going on in this donation arena in our country.
Check out this story: One donor starts chain of 5 kidney transplants
And this site: Alliance for Paired Donation
Wow.
Email me here and I can forward the transplant coordinator info at Texas Children's.
Thank you, sincerely.
Hope and love,
Kiki's Dad
His "lifeline", this fistula in his arm, is failing. And while another can be created, there are issues in going down that road that have both short term and long term serious affects on his long term prognosis. If he would be blessed with a donor kidney instead, it would be a significantly better path for him.
If you would, please talk up Christian's need for a donor kidney. A donor emerging in the next 2-3 months could be huge for him.
In addition to the fistula failing, we also got word that Christian's bone plates appear to be only months away from fusing. This is very difficult news to take for me, since I have always held out hope that a miracle would be found and Christian could grow to a full adult size and have significant bone healing and CNS healing.
The hope for that was in my heart 17 years ago, when we had our first "long term prognosis" meeting with Dr's at Arkansas Children's Hospital. While they were talking about Christian not surviving past 5-10 years, all I had in my heart was peace. When Soliris, the miracle drug that allows him a transplant, was trialed and approved 2 years ago, I could not believe that this hope I held all these years may be coming true.
If you have anyone inquire, the initial screening process is easy. It is a simple blood test that can be performed at any clinic anywhere.
Direct match donors can be B+, B-, O+ and O-. There is also a "chain donation" network that can allow a donor of any bloodtype to start a chain of donations that result in a kidney directly for Christian. It's pretty amazing what is going on in this donation arena in our country.
Check out this story: One donor starts chain of 5 kidney transplants
And this site: Alliance for Paired Donation
Wow.
Email me here and I can forward the transplant coordinator info at Texas Children's.
Thank you, sincerely.
Hope and love,
Kiki's Dad
Sunday, December 30, 2012
Thankful
As 2012 comes to a close, we want to take a moment to thank all who have supported and loved us through this very interesting year. 2012 has really been a year of ups and downs...
Ups in the most important things for us - our children, Christian's disease breakthrough, the opportunity to be on the transplant list and for all of the friends and family that have poured out their love and support for us in our fundraiser.
Downs in the challenges we and some friends we have faced. For our family, the loss of our grandmother and employment back in the summer. For our friends, some very close and difficult loss of loved ones.
2013 opens another chapter for us and we are filled with optimism on all fronts. Our prayers are that each of you who visit our page can look into 2013 with hope and optimism and lifted by the love of friends and family as we can.
Thank you.
Kiki's Dad
Ups in the most important things for us - our children, Christian's disease breakthrough, the opportunity to be on the transplant list and for all of the friends and family that have poured out their love and support for us in our fundraiser.
Downs in the challenges we and some friends we have faced. For our family, the loss of our grandmother and employment back in the summer. For our friends, some very close and difficult loss of loved ones.
2013 opens another chapter for us and we are filled with optimism on all fronts. Our prayers are that each of you who visit our page can look into 2013 with hope and optimism and lifted by the love of friends and family as we can.
Thank you.
Kiki's Dad
Wednesday, September 12, 2012
Prayers for Alexander: Donation pass-through for a true tough Tiger
Update: Alexander passed on Friday 9/14. Please see the Prayers For Alexander facebook page for details. Alexander will be laid to rest on Monday, 9/17. We continue in our prayers and thoughts for the Bradberry family. - Kiki's Dad
To all our friends... for the past few days we have been praying with and offering some long distance support to a young family in Mississippi whose son is battling HLHS... a very rare heart disease. Little Alexander has fought a Good fight, but unfortunately, today, will be removed from life support.
We have been in touch with the family and are able to arrange for Christian's Conquest to take pass-through donations for the family as many have requested.
All proceeds through this special donation button will be dedicated to the Alexander Cruz Bradberry Support fund.
To all our friends... for the past few days we have been praying with and offering some long distance support to a young family in Mississippi whose son is battling HLHS... a very rare heart disease. Little Alexander has fought a Good fight, but unfortunately, today, will be removed from life support.
We have been in touch with the family and are able to arrange for Christian's Conquest to take pass-through donations for the family as many have requested.
All proceeds through this special donation button will be dedicated to the Alexander Cruz Bradberry Support fund.
All proceeds directed to Alexander Cruz Bradberry Support Fund
Thank you!
---
Thanks to all who have expressed faith and prayers for the Bradberry's during this time. The family is genuinely touched by the outpouring of love and support.
Kiki's Dad
Monday, August 27, 2012
Quick update, then evacuate!
Well this is kind of surreal... 7 years ago to the day we were evacuating Katrina and, as we've posted here, that was the beginning of a very, very rough time for Christian. Needless to say we are in a much better position this time around - from both a medical and an experience point of view.
To all of our friends and family, and even some new ones who made it to the fundraiser yesterday, we are so, incredibly blessed. The event turnout was great, it looked like everyone was having a fantastic time and we had a very successful fundraiser.
To all who helped, donated and visited - THANK YOU!
Season ticket winner: Ken Brown and Son's from New Orleans! We will touch base soon to arrange delivery of the tickets. This looks to be a great season for our Tigers!!!
I'll have keep this short as we will be heading out to Houston at some point today. Look for updates of pictures and info from the event in the next few days.
Again, MANY THANKS!!!!
Kiki's Dad
To all of our friends and family, and even some new ones who made it to the fundraiser yesterday, we are so, incredibly blessed. The event turnout was great, it looked like everyone was having a fantastic time and we had a very successful fundraiser.
To all who helped, donated and visited - THANK YOU!
Season ticket winner: Ken Brown and Son's from New Orleans! We will touch base soon to arrange delivery of the tickets. This looks to be a great season for our Tigers!!!
I'll have keep this short as we will be heading out to Houston at some point today. Look for updates of pictures and info from the event in the next few days.
Again, MANY THANKS!!!!
Kiki's Dad
Subscribe to:
Posts (Atom)