I have added my first button to my blog and wanted to explain the story behind it. The Skinner family is in our ward at church. They are the sweetest family with two children. Shortly after we moved to Colorado we were invited to join playgroup and our first one was on Halloween at the Skinner's house. The kids all wore costumes and Natalie had made sugar cookies for them to decorate. Claire was still a new born and just as tiny and cute as can be. Within the next few weeks was Claire's baby blessing at church and I remember her father, Jared, giving her a very tender and emotional blessing. Looking back now, it seems like it was foreshadowing for the difficult life that she would lead.
Very soon after that Natalie took Claire in for her routine 2 month check up. That was the day their world got turned upside down. The Dr. was concerned that Claire was not growing and sent them straight to the hospital for tests. By the end of the day they discovered that Claire's kidneys were only functioning at 10% and she was in kidney failure. Natalie, who is my visiting teacher once told me that that day is their family's 9/11. Everything changed that day and everything is in terms of before and after that day.
They eventually figured out that she and her brother BOTH have a rare disease that causes their liver and kidneys to be overworked and eventually wear out. Claire's are already worn out, so she is on dialysis for 3 hours a day. They were doing it at night too and it was 15 hours a day, but there were recent complications with that, so for now it's 3 hours a day. Natalie gets up before the sun to get the kids ready, drop Benson off at various friend's houses, and then she and Claire head up to the hospital. During the dialysis, Claire is connected with tubes to the machine, so she has to just sit there. There's a video on their blog of Natalie entertaining her so she'll stay put and stay happy. She has to be the most patient mother on earth. It would be like taking a 3 hour plane flight with your two year old everyday. Stuck in one place and trying to make the most of it! They don't get back to pick up Benson until afternoon and then Natalie told me she tries to spend a lot of quality time with him to make up for being away from him all day. I guess one silver lining is that her kids get more one on one attention from their mother than most kids I know.
Thankfully, Benson's condition is slower progressing and they caught it before it had gotten too bad, so they are hoping with medicine his organs will last longer. The bottom line is they will both eventually need liver and kidney transplants. Their family is in the process of packing up and moving to Minnesota to be near the Mayo clinic where Claire will hopefully get her transplant this winter. They are trying to raise $100,000 toward medical expenses.
When I think about this family and the physical, emotional and financial toll this must take on them, it breaks my heart. They are so positive, patient, and faithful. They set such an example to our ward of how to have grace and humility in the face of adversity.
So, please, click on their button, read more about their story and do what you can to support them.
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