Because I sincerely believes you will want to learn more about something and someone very special to me, I blog about Claire and Benson
(A lot of you reading this blog know my best friend Rebecca Skinner, this blog is about her neice and nephew)
PLEASE READ
Claire and Benson were both born with an extremely rare genetic mutation in their liver that produces an excess amount of oxalate in their bodies. This disease is called Primary Hyperoxaluria Type 1 (PH1). Oxalate is normal in all of our bodies, but our liver only produces a small amount. Their liver doesn't. Normal oxalate numbers are around 1.8. Claire's oxalate average between 70 and 80 and have been as high as 159. Benson's is around 12. So what does excess oxalate do? It destroys.
The kidneys are the first to go because it is their job to filter waste from the body. In that filtering process, it can only handle the overload of oxalate for so long. The oxalate causes the kidneys to crystallize and eventually fail. Claire has had kidney failure since she was 2 months old and has been on dialysis ever since. Significant oxalate deposits have also been found in her eyes, bones and other organs.
Claire is currently on dialysis at the Children's Hospital in Denver Colorado 6 days a week for 3 hours each day. Sunday truly is our day of rest! Along with that, we do a different kind of dialysis, called peritoneal dialysis, at home. She gets that done every night of the week for 12 hours, while she's sleeping. Ultimately, dialysis 24/7 would be ideal for Claire to remove the oxalate that is constantly built up in her body. Obviously, that is not possible. So we do as much as we can!
The ultimate cure: transplant. For Claire, getting a new kidney or liver alone will not solve the problem. She needs both. A new liver will stop the excessive oxalate production and a new kidney will enable her body to cleanse itself. Claire is currently on the Mayo Clinic transplant list to receive a liver and kidney.
The disease advances differently in each individual. Luckily, Benson’s condition hasn’t progressed as quickly as Claire’s. He is currently being monitored and treated with several medications in hopes of slowing the process of kidney failure. He is also encouraged to drink lots of fluid to help keep the kidneys clean. In the future, Benson will likely need the same procedures as Claire.
Claire and Benson were both born with an extremely rare genetic mutation in their liver that produces an excess amount of oxalate in their bodies. This disease is called Primary Hyperoxaluria Type 1 (PH1). Oxalate is normal in all of our bodies, but our liver only produces a small amount. Their liver doesn't. Normal oxalate numbers are around 1.8. Claire's oxalate average between 70 and 80 and have been as high as 159. Benson's is around 12. So what does excess oxalate do? It destroys.
The kidneys are the first to go because it is their job to filter waste from the body. In that filtering process, it can only handle the overload of oxalate for so long. The oxalate causes the kidneys to crystallize and eventually fail. Claire has had kidney failure since she was 2 months old and has been on dialysis ever since. Significant oxalate deposits have also been found in her eyes, bones and other organs.
Claire is currently on dialysis at the Children's Hospital in Denver Colorado 6 days a week for 3 hours each day. Sunday truly is our day of rest! Along with that, we do a different kind of dialysis, called peritoneal dialysis, at home. She gets that done every night of the week for 12 hours, while she's sleeping. Ultimately, dialysis 24/7 would be ideal for Claire to remove the oxalate that is constantly built up in her body. Obviously, that is not possible. So we do as much as we can!
The ultimate cure: transplant. For Claire, getting a new kidney or liver alone will not solve the problem. She needs both. A new liver will stop the excessive oxalate production and a new kidney will enable her body to cleanse itself. Claire is currently on the Mayo Clinic transplant list to receive a liver and kidney.
The disease advances differently in each individual. Luckily, Benson’s condition hasn’t progressed as quickly as Claire’s. He is currently being monitored and treated with several medications in hopes of slowing the process of kidney failure. He is also encouraged to drink lots of fluid to help keep the kidneys clean. In the future, Benson will likely need the same procedures as Claire.
It is estimated that the family will face expenses before-and after- a transplant greater than $100,000.00 after insurance. We have teamed up with Children's Organ Transplant Association (COTA). a premier national charity, to raise funds (http://www.cota.org/). Every dollar contributed is used for patients transplant-related expenses.
WHAT CAN YOU DO TO HELP:
Make a secure on-line donation through http://www.COTAforBensonandClaireS.com/. If you will do this, and then forward this letter to your co-workers, friends, and the people in your address book, and they in turn will do the same, this email will begin to circle the globe.
WHAT CAN YOU DO TO HELP:
Make a secure on-line donation through http://www.COTAforBensonandClaireS.com/. If you will do this, and then forward this letter to your co-workers, friends, and the people in your address book, and they in turn will do the same, this email will begin to circle the globe.
Send a check, payable to COTA with Benson and Claire S. in the memo space to:
Children's Organ Transplant Association
2501 West COTA Drive
Bloomington, IN 47403
Whether it is $2, $10, or $1000, every generous gift of kindness will help, and your donation is tax deductible.
I invite you to click on the "Donate Now" button at http://www.COTAforBensonandClaireS.com/ and follow the progress of this miracle to which you have contributed. I also ask that no matter if you are able to participate or not, please forward this opportunity to your circle of Internet influence, and invite your co-workers to learn more.
IF you feel you can't give ANY money...PLEASE SHARE this story with others and help us create this MIRACLE!! Or even better, come up with creative ideas of how you can fundraise money to help these two sweet kids.
Children's Organ Transplant Association
2501 West COTA Drive
Bloomington, IN 47403
Whether it is $2, $10, or $1000, every generous gift of kindness will help, and your donation is tax deductible.
I invite you to click on the "Donate Now" button at http://www.COTAforBensonandClaireS.com/ and follow the progress of this miracle to which you have contributed. I also ask that no matter if you are able to participate or not, please forward this opportunity to your circle of Internet influence, and invite your co-workers to learn more.
IF you feel you can't give ANY money...PLEASE SHARE this story with others and help us create this MIRACLE!! Or even better, come up with creative ideas of how you can fundraise money to help these two sweet kids.
I hope this story has touched your heart, because it is so close to mine. Thank-you for considering a donation that will help make a life-saving difference for this precious Claire and Benson.
2 comments:
Thanks for putting this on your blog. I borrowed it and put it on mine. I've always wondered what I could do to help...it breaks my heart evertime I talk to Becca's mom about it.
Thanks Nat, man your on top of things I was just going to do this on my blog! Your awesome!!
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