New Life for Zion...

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:

http://www.11alive.com/news/local/story.aspx?storyid=187522

We recently photographed Zion and his little brother Donovan along with Mike and Alisan Parnes.

Here is their story....

__________________________

__________
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.

____________________________________
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.

__________________________

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".

____________________________________
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.inspirationthroughart.org/
____________________________________
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.org/visit/kidneypains

____________________________________
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.

____________________________________
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-photography.com

Praying For A Miracle....The Story Of Josh and Rebecca Chandler

Meet Josh and Rebecca Chandler…..

Josh and Rebecca are a young, sweet and amazing couple. They have been married almost seven years and have two children, Caleb 4 and Havanna who is 2. They are expecting their third child, a little boy, in mid July.

Josh is an officer with the Georgia State Patrol. He also works a second job at Hartsfield International airport to help make ends meet. After their second child was born, Rebecca gave up her career in the dental field in order to stay at home with their children.

Josh and Rebecca are having to face something that no young couple should have to deal with….This past February, during an OBGYN visit at Rebecca’s 18^th week, doctors discovered that the baby’s kidneys’ were enlarged and that the amniotic fluid surrounding him was dangerously low. Rebecca was put into the hospital for Valentine’s Day where she stayed for four days. Doctors performed tests and procedures to try and find out what was wrong. The diagnosis was that their baby has Autosomal Recessive Polycystic Kidney Disease (ARPKD)….a parent’s worst nightmare.

Autosomal recessive polycystic kidney disease, ARPKD, is a rare genetic disorder, occurring in approximately 1 in 20,000 individuals. It affects boys and girls equally and often causes significant mortality in the first month of life.
 
If the child survives the newborn period, the chances of survival are good. For these children, approximately one-third will need dialysis or transplantation by the age of 10. However, doctors have told Josh and Rebecca that their baby has only a 1% chance of survival at birth.

Hearing this news was devastating to this young couple. They sought out second opinions from many doctors and specialists throughout Atlanta. Most doctors offered them little to no hope and recommended that they terminate the pregnancy. However, this was not an option for Josh and Rebecca. They made the decision to look at this from a hopeful, positive perspective. They found a wonderful group of doctors out of Northside who have been very upfront with them about PKD, but who are also very supportive at the same time.

They have found help and support through the PKD foundation (www.pkdcure.org) and have met an amazing woman named Julia Roberts, who is the Atlanta liaison for the PKD foundation. Julia has been a tremendous help and support to Josh and Rebecca, providing them with informational and emotional support and with friendship.

Josh and Rebecca continue to choose to look at this situation from the perspective that the “glass is half full” instead of half empty. Although this journey has taken an emotional and financial toll on them, they can already see good things that have come from this:

They have made a life-long friend in Julia from the PKD foundation…and have met countless, wonderful and supportive people along the way.

Caleb’s preschool teacher at Temple Methodist Church has also been tremendously helpful and supportive. Josh and Rebecca, who both come from very different religious upbringings, have begun attending Temple Methodist and are amazed at how people have reached out to them to offer prayer and support to their family.

Good friends have been their pillar of strength.

And of course, Josh and Rebecca have each other to lean on. They say that their two children, Caleb and Havanna, coupled with their love for each other, are what keep them going.

Josh and Rebecca have chosen to name their baby “Nolan”, which means “fighter”. Every day Rebecca counts the number of movements she feels with Nolan….and with every kick and movement she feels, she is hopeful for a miracle.

Josh and Rebecca were referred to us through a friend who told them about our affiliation with the Now I Lay Me Down To Sleep Foundation and with the Littlest Heroes Project. Through the Littlest Heroes Project, we give back to the community by providing complimentary photography sessions and prints to families who have children with terminal illness and/or life altering disabilities. Now I Lay Me Down To Sleep (NILMDTS) is another non-profit organization we are proud and honored to be a part of. Through this organization, we provide complimentary photography to families of infants who will never leave the hospital.

Josh and Rebecca are thankful for the photography services that will be provided to them through the Now I Lay Me Down To Sleep Foundation. We are honored that they have selected us to accompany them to Northside Hospital and to be there to photograph the 1-2 hours that they hope to have with Nolan after he is born.

Beverly recently traveled to Temple to meet Josh, Rebecca, Caleb and Havanna. They wanted us to do a family photo session with them, capturing images of the four of them together while Rebecca is still pregnant. We started out by doing come candid photos of the kids getting ready. Havanna showed me a little silver monogrammed bracelet that she was wearing…I photographed Josh and Rebecca helping the children put on their shoes and did some other candid shots before we headed out.

We started our photo session by traveling just down the road in Temple, to the house where Josh grew up. Coming back to the house brought back many memories for Josh. The house is empty now….but his childhood memories still linger. Caleb and Havanna were drawn to an old tree house where their Daddy used to play. It was fun photographing this loving family together.

We have put together a photography music video of the time I spent getting to know this amazing family. As each day passes, we are all Praying for A Miracle…..

Click Here To View the Video

To learn more about PKD and the PKD Foundation, Click HERE

To learn more about Now I Lay Me Down To Sleep, Click HERE