Sunday, September 15, 2013

Our Sweet Crystal Mae


It has been quite a year so far for our beautiful, sweet 15 year-old granddaughter in Texas. And there is much more that she will go through this calendar year.

After some physical concerns in the beginning of this calendar year, and after a series of doctor visits and lots of testing, we heard the devastating news that Crystal has Juvenile Nephronophthisis. This is a very rare genetic kidney disease (chances are one in a million), where a person's kidneys will fail sometime in their teen years. There is no cure; and the form of treatment is to have a kidney transplant.

At the time of diagnosis, Crystal's kidneys were functioning at about 40%, and the doctor estimated that she would be in need of a kidney transplant by the spring or summer of 2014. 

However, at Crystal's testing and reevaluation in August, it was discovered that her kidney function had already dropped down to 24%. This is the level when preparations for a kidney transplant begin in earnest. All the paperwork in preparation for a transplant and for insurance coverage has been done, and has been approved. And tomorrow Crystal will be going through a full day of lab work, testing, and meeting with an array of doctors who will be involved in the process of transplant. 

We don't know yet when the transplant will be, but are assuming that it will be before the end of this calendar year. Cristy & Mark, our daughter and son-in-law, will be considered first of all as possible donors. Cristy will begin some of the necessary lab work tomorrow to see if she will qualify. Both Cristy & Mark's blood types are good matches for Crystal, but there is much more that is checked to find exactly the best possible match. 

Please pray for Crystal, for her parents, and the rest of their family - Abigail (17), Luke (11), and Brianna (7). It has been a year with a lot of doctor visits, and a lot of unknowns. We are so grateful for their strong faith and trust in the midst of this difficult situation. 

Even Crystal has been so strong, and has often been the one who encourages the rest of us. She suffers daily from the affects of poor kidney function, struggles with nausea through much of each day, needs to have repeated shots, takes medications to keep her blood pressure in normal ranges, and experiences general overall fatigue. She continues on with her sophomore classes in the midst of all that she is going through. Her sweet spirit and her faith and trust in God are a blessing to us; we thank God for His presence and love in her life.

Of course, this is so hard for us as grandparents, as well. How we would love to be nearby and be of help on a continuing basis. Our trip to TX the end of May was a very special time. And we are so grateful for the support and encouragement we have been given by our leaders at Cru headquarters in FL - granting us time off to help our family for two to four weeks at the time of transplant.

You are invited to read many more details that our daughter, Cristy, puts up on Crystal's CaringBridge site - click here. And we greatly appreciate your prayers - and thank those of you who have already been praying for our sweet Crystal Mae. 


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