Care For Blair

Every parent knows what it means to love a child. To hold them in your arms, play with their little fingers and toes, kiss their heads, and rock them to sleep. This love only grows as your child starts to become the person they will be for the rest of their lives. This happy, healthy fairytale is what most of us are lucky enough to take for granted. In 2006 this fairytale abruptly ended for us. 

 Christina was up for reenlistment in the Navy, ready for another 4 years of service to add to her 8 in her long committed career of duty to her country and Blair was the epitome of cuteness and life that was unsurpassed for all who knew her. Within days, early into the year, normalcy turned into confusion and life-changing heartbreak. 

 Blair was only 4 years old when the Navy doctor told Christina that her child was in renal failure and would require a kidney transplant in order to live another year. There were so many questions, so many new terms and medical jargon. It was confusing and terrifying. What was Juvenile Nephronophthisis? How do we stop it? How do we comfort a child being poked and prodded daily? How and why did this happen to our Blair?

She was born this way and it was genetic. Parents can understand the overwhelming feelings of guilt that come from knowing that. I remember Blair looking up at her mother, begging her to make them stop hurting her, with pure terror in her eyes. There is nothing more torturous for a parent than to see your child in pain and not be able to make it go away. These repeated episodes are forever burned into our souls.  There was no day or time in the next ten years that Christina would be able to do this for her daughter. 

Christina's career abruptly ended and the fight to save Blair's life started. The family moved to Pennsylvania and immediately started prepping for a kidney transplant at Penn State Transplant Center. The day before Blair's 6th birthday, the call came! Our family came from around the country to be there for this little girl. She had touched so many already. The donated kidney was from a young man who was taken from this world far too early and his family chose to give the gift of life for our Blair. She thrived for a short while. The blood draws, doctor visits, hospital stays, treatment regimes, transfusions and all other efforts to save the kidney increased as time went on. 

In 2010 Blair started to reject her donated kidney. Numerous acute rejection episodes requiring long hospital stays were crushing. Hearing the news that she was again going to have to fight to stay alive was devastating. Blair went through drastic physical changes due to her drug therapy and the hospital stays became longer and more frequent, they poked and prodded more and more. We were very lucky that our family was able to move closer to support Christina and Blair. The medical expenses were devastating to the family and year after year the thought of medical bankruptcy loomed, even though Christina worked and supported Blair as best she could.

Now Blair is back on the transplant list as her once strong kidney has lost its battle to rejection. The list is longer than we'd like and we are actively seeking a living donor as the chances of keeping a living donor kidney is much longer for Blair.

As difficult as all of this is and has been, asking for help adds another layer of discomfort. During the meetings with the transplant team at Florida Hospital Transplant Institute, the family was cautioned about the very real possibilities of medical bankruptcy and suggested that fundraising start immediately to assist in a healthy and easy transition to a new kidney.

There will be substantial costs not covered by insurance. With the help of donations, the family can ensure that Blair receives the best treatment with the latest advances in transplantation. There is no normal for Blair, but with your help we can keep her at the forefront of her fight against kidney disease. 

Please help us in our efforts to provide the very best care possible for Blair.  The transplant process is long, complicated, and costly with escalating physician visits and labs leading up to the transplant and the overwhelming care post-transplant.  Your donation can help diminish the weight of financial burdens and help focus on a healthy life for Blair.  You can make a difference in a young girl’s life!!!  Our family thanks you for your consideration.  Donate Life!

Love,
Blair's Grandma (Andi)