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IMAGINE.....
Being a young family with two little boys and finding out that one of them at age 5 has a very rare and very serious kidney disorder.
Just Imagine...
That soon after you have been hit with news that one child is very sick....you then find out that your other child has the same devastating medical issue.
This is the story of Mike, Alisan, Zion and Donovan Parnes.
Next week will be a big week for several families as 6 surgeries will take place over a two day period at Emory and Egleston Hospital as a part of a miraculous "kidney swap". Zion will be getting his long awaited kidney, and his dad, Mike, will be giving a kidney to someone else. Beverly Williams of
Chuck Williams Photography, along with 11 Alive Reporter Jaye Watson, will be in the operating room next week documenting Zion's surgery.
Watch the 11 Alive Video Story Here:
We recently photographed Zion and his little brother Donovan along with Mike and Alisan Parnes.
Here is their story....
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WORLD TURNED UPSIDE DOWN
Mike is a Director with Cartoon Network in Atlanta. Alisan is a Veterinarian. Two years ago, they were just like any other family - A happy couple blessed with two adorable little boys. Then suddenly their lives were all completely turned upside down....
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ZION'S STORY
In August, 2009, Zion who was 5 at the time, had just entered kindergarten. He developed a skin rash that wouldn't go away and was itching him like crazy. This prompted the visit to the pediatrician. The rash was a common skin infection that a lot of kids get, however he had lost some weight and so the doctor decided to run some labs. A routine urinalysis showed excessive protein in his urine and his bloodwork revealed that his kidneys were not working up to task. A biopsy revealed a diagnosis of FSGS (Focal Segmental Glomerulosclerosis), an extremely rare kidney disorder in which, in most cases, the body, for some unknown reason, literally attacks the kidneys.
WORLD TURNED UPSIDE DOWN
Mike is a Director with Cartoon Network in Atlanta. Alisan is a Veterinarian. Two years ago, they were just like any other family - A happy couple blessed with two adorable little boys. Then suddenly their lives were all completely turned upside down....
__________________________
ZION'S STORY
In August, 2009, Zion who was 5 at the time, had just entered kindergarten. He developed a skin rash that wouldn't go away and was itching him like crazy. This prompted the visit to the pediatrician. The rash was a common skin infection that a lot of kids get, however he had lost some weight and so the doctor decided to run some labs. A routine urinalysis showed excessive protein in his urine and his bloodwork revealed that his kidneys were not working up to task. A biopsy revealed a diagnosis of FSGS (Focal Segmental Glomerulosclerosis), an extremely rare kidney disorder in which, in most cases, the body, for some unknown reason, literally attacks the kidneys.
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LIFE THREATENING DIAGNOSIS
Zion's doctors had never seen such a severe case of FSGS in someone as young as Zion and he was sent to the National Institute of Health for further examination.
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THEY CHECK DONOVAN JUST FOR PEACE OF MIND...
Just to be sure that their other child was healthy, Alisan and Mike decided to have Donovan screened just to put their minds at ease. He had always been a healthy, strong and thriving child. Plus, FSGS in siblings is virtually unheard of. They were told that the odds of having two children with FSGS was so unheard of, it would be like winning the lottery twice.
Shortly after having Donovan tested, Mike and Alisan received a shocking telephone call....Donovan also had tested positive for FSGS.
LIFE THREATENING DIAGNOSIS
Zion's doctors had never seen such a severe case of FSGS in someone as young as Zion and he was sent to the National Institute of Health for further examination.
__________________________THEY CHECK DONOVAN JUST FOR PEACE OF MIND...
Just to be sure that their other child was healthy, Alisan and Mike decided to have Donovan screened just to put their minds at ease. He had always been a healthy, strong and thriving child. Plus, FSGS in siblings is virtually unheard of. They were told that the odds of having two children with FSGS was so unheard of, it would be like winning the lottery twice.
Shortly after having Donovan tested, Mike and Alisan received a shocking telephone call....Donovan also had tested positive for FSGS.
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WHAT'S CAUSING THIS??
Genetic testing came up negative...So the question remains....Is the cause of this genetic, autoimmune, viral, environmental or a combination of the above? That's the million dollar question to which no one knows the answer. So far the answer is "Idiopathic" meaning "Unknown Cause".
Genetic testing came up negative...So the question remains....Is the cause of this genetic, autoimmune, viral, environmental or a combination of the above? That's the million dollar question to which no one knows the answer. So far the answer is "Idiopathic" meaning "Unknown Cause".
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ZION LOSES BOTH KIDNEYS
Zion had both of his kidneys removed earlier this year and is currently on peritoneal dialysis awaiting a kidney transplant.
Donovan (who will be 4 in April) may eventually have to face the same thing. The doctors have warned Alisan and Mike that his kidneys may also fail at around age 5 or 6.
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INSPIRATION THROUGH ART
(Formerly The Littlest Heroes Project)
We met Alisan and Mike several months ago when they learned of our affiliation with Inspiration Through Art (formerly The Littlest Heroes Project).
http://www.inspirationthro
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READ MORE AND FOLLOW THEIR STORY....
Over the last several months, we have kept in touch with Alisan through her Caring Bridge Website where she updates friends, family and strangers who are interested in following their journey.
They'd also love for you to sign their guest book.
http://www.caringbridge.or
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A TRANSPLANT IS ON THE HORIZON
Last week, Alisan contacted us to let us know that Zion will be admitted to Children's Healthcare of Atlanta next week for a kidney transplant.
However, this is no ordinary kidney transplant....
ZION LOSES BOTH KIDNEYS
Zion had both of his kidneys removed earlier this year and is currently on peritoneal dialysis awaiting a kidney transplant.
Donovan (who will be 4 in April) may eventually have to face the same thing. The doctors have warned Alisan and Mike that his kidneys may also fail at around age 5 or 6.
__________________________
INSPIRATION THROUGH ART
(Formerly The Littlest Heroes Project)
We met Alisan and Mike several months ago when they learned of our affiliation with Inspiration Through Art (formerly The Littlest Heroes Project).
http://www.inspirationthro
__________________________READ MORE AND FOLLOW THEIR STORY....
Over the last several months, we have kept in touch with Alisan through her Caring Bridge Website where she updates friends, family and strangers who are interested in following their journey.
They'd also love for you to sign their guest book.
http://www.caringbridge.or
__________________________
A TRANSPLANT IS ON THE HORIZON
Last week, Alisan contacted us to let us know that Zion will be admitted to Children's Healthcare of Atlanta next week for a kidney transplant.
However, this is no ordinary kidney transplant....
__________________________
ALTRUISM....
Definition: Altruism (pronounced /ˈæltruːɪzəm/) is selfless concern for the welfare of others. Altruism is the opposite of selfishness. Altruism focuses on a motivation to help others or a want to do good without reward.
ALTRUISM....
Definition: Altruism (pronounced /ˈæltruːɪzəm/) is selfless concern for the welfare of others. Altruism is the opposite of selfishness. Altruism focuses on a motivation to help others or a want to do good without reward.
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A DONOR HAS COME FORWARD
One year ago, a young man, unbeknownst to Mike and Alisan, approached the transplant surgeon wanting to donate a kidney to someone out of the goodness of his heart. All they know about him is he is fairly young, in great health, and highly motivated to do this.
The medical team has organized a "kidney chain" using him and several other families in order to maximize the number of transplants - ie "kidney swap".
The Parnes family got involved in this potential chain after both Alisan and Mike had been turned down as kidney donors for their children.
Mike recently signed up to donate one of his own kidneys to someone in exchange for someone to donate to Zion. The surgeries will all take place next week over a 2 day period. Six separate surgeries....several new leases on life...
Chuck Williams Photography will be accompanying Zion and his family next week as they prepare to to receive his new kidney.
Watch our blog, 11 Alive News and Zion/Donovan's Caring Bridge Site for updates.
A DONOR HAS COME FORWARD
One year ago, a young man, unbeknownst to Mike and Alisan, approached the transplant surgeon wanting to donate a kidney to someone out of the goodness of his heart. All they know about him is he is fairly young, in great health, and highly motivated to do this.
The medical team has organized a "kidney chain" using him and several other families in order to maximize the number of transplants - ie "kidney swap".
The Parnes family got involved in this potential chain after both Alisan and Mike had been turned down as kidney donors for their children.
Mike recently signed up to donate one of his own kidneys to someone in exchange for someone to donate to Zion. The surgeries will all take place next week over a 2 day period. Six separate surgeries....several new leases on life...Chuck Williams Photography will be accompanying Zion and his family next week as they prepare to to receive his new kidney.
Watch our blog, 11 Alive News and Zion/Donovan's Caring Bridge Site for updates.
Become A Donor....Save A Life
Chuck Williams Photography
Chuck, Beverly & Chris Williams
404 925-2921
www.chuckwilliams-photogra
Chuck Williams Photography
Chuck, Beverly & Chris Williams
404 925-2921
www.chuckwilliams-photogra
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