So I would think everyone knows this but for some that may not know I am legally blind. I would like to give a lil idea on how much vision I have. I have about 6 degrees of vision. This picture should give everyone an idea what 6 degrees is. Brian’s right kidney recipient, Tarin, has allowed me permission to share his recent Facebook post. We are one of the fortunate few, to have the privilege of meeting and knowing one of our son’s organ recipients. For April, Donate Life Month, I cannot think of a better way to honor my Brian and his legacy, than to share Tarin’s story.
Tarin was born with a very rare disorder called Senor-Løken syndrome. Senior-Løken syndrome occurs in about 1 in 1 million people worldwide. Only a few families with the condition have been described in medical literature. Tarin happens to be 1 of 3 people in the State of Utah with this rare condition. It is characterized by the combination of two specific features: a kidney condition called nephronophthisis and an eye condition known as Leber congenital amaurosis.
Tarin's doctors informed his parents, that by the time Tarin reached 18 years of age, he would be legally blind and he would need a kidney transplant. True to the doctors predictions, at 18 years of age that is exactly what happened.
Brian’s right kidney became Tarin’s kidney, November 23, 2009, one day after Brian’s organs were recovered. Brian’s kidney was Tarin’s 3rd attempt at a successful transplant. He told me, that he knew on his way to the hospital, that this time it would be a match, and it was.
When I saw this graph posted on Tarin’s Facebook page, I asked him if I could share. I knew he was legally blind; but the graph provides a more intimate analysis. I thought about the difficulties and fears Tarin must have faced while growing up a young boy, slowly losing his sight. I thought about his mother and father and how worried they must have been all those years waiting and watching the symptoms take over their son’s body, knowing that eventually their little boy would need to rely on dialysis for survival. And I thought how wonderful it was to know that Brian’s gift, gave this young man and his family one less thing to worry about, one less struggle to endure and that a young life that had lost so much too soon, was finally given something back.
There can be no greater gift, than the gift of life to another. If he could have, I know my Brian would have said to us, to what purpose should his organs leave this earth with him, when they could give so much to others. Not just life to the recipient, but joy to family and friends; a new found purpose and direction on both sides of the gift given, a second chance to complete unfulfilled dreams and goals, the opening a new future with bright surprises and promises for a better tomorrow.
Tarin is now 25 years old, a young adult. The loss of Brian nearly 7 years ago almost killed us; and hurts deeply to this day, to this very moment. But knowing this young man has been relieved of one burden, one struggle, has continued life because we said yes, gave me pause to say thank you GOD for giving us the strength in our grief to say yes to donate Brian’s organs. At the time I could never have foreseen myself smiling in grief, but for Tarin, his family and 5 other strangers I do.
For others like Tarin and in memory of our Brian, be an Organ Donor today and make a difference in the life of someone else. Just click on the link below or copy and paste in your browser and then say yes.
http://donateLIFEcalifornia.org/BrianChristianEllis/
Love & Peace,
Diane Linares ( aka mudder)
Tarin was born with a very rare disorder called Senor-Løken syndrome. Senior-Løken syndrome occurs in about 1 in 1 million people worldwide. Only a few families with the condition have been described in medical literature. Tarin happens to be 1 of 3 people in the State of Utah with this rare condition. It is characterized by the combination of two specific features: a kidney condition called nephronophthisis and an eye condition known as Leber congenital amaurosis.
Tarin's doctors informed his parents, that by the time Tarin reached 18 years of age, he would be legally blind and he would need a kidney transplant. True to the doctors predictions, at 18 years of age that is exactly what happened.
Brian’s right kidney became Tarin’s kidney, November 23, 2009, one day after Brian’s organs were recovered. Brian’s kidney was Tarin’s 3rd attempt at a successful transplant. He told me, that he knew on his way to the hospital, that this time it would be a match, and it was.
When I saw this graph posted on Tarin’s Facebook page, I asked him if I could share. I knew he was legally blind; but the graph provides a more intimate analysis. I thought about the difficulties and fears Tarin must have faced while growing up a young boy, slowly losing his sight. I thought about his mother and father and how worried they must have been all those years waiting and watching the symptoms take over their son’s body, knowing that eventually their little boy would need to rely on dialysis for survival. And I thought how wonderful it was to know that Brian’s gift, gave this young man and his family one less thing to worry about, one less struggle to endure and that a young life that had lost so much too soon, was finally given something back.
There can be no greater gift, than the gift of life to another. If he could have, I know my Brian would have said to us, to what purpose should his organs leave this earth with him, when they could give so much to others. Not just life to the recipient, but joy to family and friends; a new found purpose and direction on both sides of the gift given, a second chance to complete unfulfilled dreams and goals, the opening a new future with bright surprises and promises for a better tomorrow.
Tarin is now 25 years old, a young adult. The loss of Brian nearly 7 years ago almost killed us; and hurts deeply to this day, to this very moment. But knowing this young man has been relieved of one burden, one struggle, has continued life because we said yes, gave me pause to say thank you GOD for giving us the strength in our grief to say yes to donate Brian’s organs. At the time I could never have foreseen myself smiling in grief, but for Tarin, his family and 5 other strangers I do.
For others like Tarin and in memory of our Brian, be an Organ Donor today and make a difference in the life of someone else. Just click on the link below or copy and paste in your browser and then say yes.
http://donateLIFEcalifornia.org/BrianChristianEllis/
Love & Peace,
Diane Linares ( aka mudder)
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