A Prayer for Little Claire

Two cute kids! Claire and Benson Skinner

Sometimes I don't do something that I really want to do, just because I am scared. Silly, right? Something I have been wanting to do for weeks--indeed I said I would do it--is to write about a little girl and her family facing big hurdles. I've fasted and prayed about this little girl, and now I'm just going to dive in and tell you all the story. Because when you hear it I bet you'll start fasting and praying for her too, and that can only help things along.

We met Jared and Natalie Skinner in June when we moved back into our old ward. They have two young children, Benson (4) and Claire (2). I knew Benson from Jr. Primary and let me just tell you, you will never meet a sweeter, happier, more beaming child. Claire always seemed more serious, especially for her age. Definitely sweet as well, but a much more pensive child. Like she had an old soul. Natalie was the ward chorister. I kept hearing announcements at church about the ward doing fundraisers like garage sales and bake sales for the Skinners, only I didn't know who they were. (Of course I knew them, I just didn't know that Skinner was their last name.) I knew that the Skinners were moving to Minneapolis to be near the Mayo Clinic. Both children were born with a disease that necessitates a kidney and liver transplant. It wasn't until their last week at church that I put the names and the faces together. I attribute this to the Skinner family. Always happily participating in ward activities and callings, they just didn't seem like a family faced with serious medical problems.

Let me tell you a little about their serious medical problems. Although both children have been diagnosed with primary hyperoxaluria, it is Claire who is most seriously ill right now. One of the youngest children ever to be diagnosed with the disease, she was only 3 months old when she was started on dialysis.

Adorable Claire at her blessing. I mean, have you ever?

Six days a week she goes to the hospital for a 3 hour dialysis treatment. Frequently she is at the hospital longer as they need to give her other medications and treatments. She is currently on the waiting list for a kidney/liver transplant. The call could come any time. Although they have insurance, they expect to pay about $100,000 dollars out of pocket for her surgery. Eventually Benson will need the same. Add on the expense of life-long drugs to keep the body from rejecting the donated organs, plus all of the other medical problems that arise from kidney failure (and there are many), and you have one little family with HUGE financial burdens.

Just some of the recent medical trials Claire has been enduring:

October 2 was supposed to be a routine surgery to replace a line going into her body but it turned into open heart surgery after a surgeon inadvertently punctured Claire's heart. As Claire was struggling to make it through the surgery, a kidney and liver became available for her but had to be denied because the doctors felt recovering from open heart surgery on top of receiving the new kidney/liver would be too much. Complications from the surgery left Claire with a knee-to-belly button sized blood clot on one side of her body for which she requires two shots of Heparin a day. Although she has recovered very well from the heart surgery, a few weeks ago an innocent slip down two stairs on her porch resulted in two broken legs. (Her kidney condition leaves her extremely susceptible to breaks.)

Natalie with Claire after the heart surgery

Devoted Benson at Claire's side after the surgery. She was asleep for 6 says and then awake for the next 5. Her body just couldn't process all the meds the way a child with healthy kidneys could.

More recently, The Little Princess with her purple and pink casts

Through it all she continues to be Claire, a sweetheart and a fighter combined. Natalie says she rarely complains or cries during most of her procedures and is happy as long as she has her best friend Benson with her. The special relationship Benson and Claire share brings tears to my eyes just thinking about it. I truly believe that Benson is Claire's angel on earth. He is so sensitive to her needs--sometimes asking to end a play date or other fun activity early just so he can be with her at the hospital for her dialysis.

Benson chillin with Claire during the daily dialysis gig.

Please go to their blog http://www.givehopetobensonandclaire.blogspot.com/ . You can meet them, see more adorable pictures and click on their links to the online auction (ending tonight at midnight!) and to their donation site. Our family is putting together a box of toys/activities for Claire and Benson to do during those looong dialysis days at the hospital. If you would like to add anything to our box let me know. We will be sending it out mid December. I feel like a dope for taking so long to get this simple post together, but I guess I was worried I wouldn't be able to communicate to you the love of this family that all of us who know them have for them. They are so faithful and trusting in God's plan for them, yet endearingly normal. They expect to be in Minneapolis for the year and then return to us in Highlands Ranch. We can't wait to have them all back!