11-year-old looks to Facebook for kidney

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AUBURN — Social media is no stranger to people asking for help — but a post about an 11-year-old girl from Auburn is drawing a lot of attention. 

Emily Pooler has Stage Four Chronic Kidney Disease and needs a kidney donor. In order to reach a wider audience, her mother shared a video on Facebook regarding her daughter’s need of a kidney transplant in order to survive.

“I never thought that putting a 30-second video of Emily sharing that she is looking for a kidney donor would draw so much attention,” said Alison Walker-Pooler, Emily’s mom. “We saw the Maine Transplant Program at the end of June for our yearly visit and I asked them, ‘How do I find her a kidney?’”

The Maine Transplant Program suggested that they reach out on social media. So they decided to make a video. 

Alison thought she would just get a few Facebook friends to share it and maybe someone would come forward.

Now the original video has close to 10,000 views.

“Everyone was sharing it,” Alison said. “She was on the news — people were contacting me online asking how they can help and they want to donate.”

The response, she said, has been “absolutely fantastic.” 

“We are just so grateful and so thankful and overwhelmed by the support and kindness everyone has shown,” she said. “We are just so thankful. How do you say thank you to people who want to give the gift of life to your daughter?”

Emily Pooler was diagnosed with a very rare condition called caudal regression syndrome, a spine abnormality where the spine does not grow fully. For Emily, that meant she was missing her entire sacrum and coccyx, which is the very end of her spine, according to her mother.

“We got the diagnosis in April 2010, just a couple of weeks before her fourth birthday,” Alison said.

She said they knew early on that Emily had a bad left kidney from damage caused by kidney reflux and pyelonephritis, a severe kidney infection, but her right kidney was healthy and doing all the work so they “didn’t think much of it because you can live with one kidney with no issues,” she said.

Emily has had 10 surgeries from 2010 to 2014.

The day after one surgery on Aug. 4, 2014, Alison said, “we had doctors come in to tell us more devastating news. Her right kidney — her only healthy kidney — was now failing and she needed a kidney transplant.” 

She said they were told Emily would need the transplant immediately, but her kidney function improved enough that the doctors gave her another year and a half. Now her doctors say the kidney function will go down once puberty hits.

Emily’s parents, Alison and Robert, are unfortunately not eligible to be living transplant donors.

“We’ve literally been living on a hope and a prayer,” Alison said. “Her kidney function has been stable, at between 28 to 30 percent. It will never be higher without a transplant.” 

Alison said to stay positive they try to keep Emily’s life as normal as possible, saying she loves to cook and read, has wonderful friends, and plays with her brother.

“Nothing slows her down,” Alison said. “Not even her conditions. She just does what every child does. You would never in a million years guess she has two life-threatening conditions and needs a kidney transplant.”

She said Emily is a Make-A-Wish kid, and for her wish in 2015, they went to Walt Disney World in Florida.

“Emily is now 11,” Alison said. “We are just wanting to find her a donor so she can continue to smile, laugh and do all she loves to do. She is a warrior who has been through so much and has fought since day one of birth because she was born seven weeks early,” she said.

Alison said there are no words to express how much gratitude she feels. She’s optimistic that a donor match will be found. 

“The response has been so positive and so awesome,” she said. “We just want to hug everyone who has reached out to us either to want to donate their kidney or share her story and tell them thank you from the bottom of our hearts. I don’t think they will ever understand just how much this means to us and to Emily.”

Emily Pooler needs a new kidney. If you think you’re a match, you can contact the Maine Transplant Program at 207-662-7180.

To be a living donor, you need to meet the BMI requirement between 18 to 35 percent. Emily’s blood type is A-, which means she can accept a kidney from someone with A or O blood, either negative or positive. Potential donors can not do drugs or have any medical conditions. Donors must also be over 18 years of age.

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