Hi, my name is Sarah and I live in Louisiana; I am writing to tell you a little about my sister-in law, Crystal. 

Crystal was diagnosed with kidney disease when she was 13 years old. Upon being diagnosed, it was determined that she had no function in one kidney and about 30% in the other. It is still undetermined why this happened. She was immediately put on dialysis. Her first surgery to put in a port was unsuccessful (the doctor put it in up-side down!!). Dialysis was very hard on her, as it is for all patients. There were repeated trips to New Orleans (4hrs each way) for check ups and blood work. She was placed on the donor list while family members were screened. Her mom was out because of high blood pressure. Her father was decided to be the "best" but not "perfect" match. 

A dry transplant was performed on March 8, 1988. The doctors gave the kidney 5 years max, because of the less than perfect match. Crystal was put on very high doses of anti-rejection drugs. A few days post transplant, she woke up with blurred vision - this only got worse. The high doses of prednisone had caused damage to her optic nerve, leaving her legally blind. 

Despite 2 minor rejections (early on) IT HAS BEEN 15 YEARS!!!!!!!!!!!!!!! and Jethro (our pet name for the kidney) is still going strong!!! Crystal still has eye problems, she will never drive or read unassisted very well. But despite these obstacles she attended USL and received a bachelors degree in child and family studies!! She doesn't let anything stop her. 

I just wanted to write to express my thanks for you and your family for your very brave and uplifting story in the Family Circle magazine. I just picked it up today after a friend had called and relayed your story to me. I applaud your courage and your family for never giving up hope! 

I know how difficult that can be at times, especially when you have medical expert's describing to you the "numbing" outlook for your unborn child. I too have a similar story, sort of - when I was 26 weeks pregnant with my son (our only child), a routine ultrasound detected a mass on his liver and kidneys; the prognosis was poor. They told us that his lungs were not forming properly and that he would most likely be stillborn, or die very shortly after birth...in that moment our whole life changed (as you well know).

We tried to remain optimistic, however we were so anxious for the birth. At 38 weeks I was induced and just like your son Dylan, Liam was born through regular vaginal birth, and let out a loud cry...to the delight of everyone present. Unfortunately we were so worried about what was to come that we really lost the "joy" of the birthing experience as we were filled with such worry and concern.

He was taken immediately to Sick Kids Hospital (in Toronto where we live)...and 2 weeks later we had our diagnosis - it wasn't good. Liam had a very rare disease called Caroli's Disease. This involves Autosomal Recessive Polycystic Kidney Disease as well as Congenital Hepatic Fibrosis of his liver. The mortality rate is extremely high, especially in the first year.

Well, after the shock/anger/grief of the diagnosis...we are happy to say that our son Liam will be turning 3 years old this June 15, 2003. He is a very active little boy who loves hockey and golf. He is on numerous medications for his high blood pressure (which is the main problem currently and has been since birth). They anticipate that he will need his first transplant at 6 years of age (kidney); they can't tell us about transplanting his liver, as they really don’t know what to expect as this is so rare. So our hope is that his liver will continue to function (we wait and hold our breath every 3 months when we go to the clinic for blood work). 

Anyway I just felt compelled to write to you to say THANKS for your very moving and courageous story. Even though our children have different diseases, they are somewhat similar with the cystic kidneys. Liam’s involves both kidneys and is an inherited disease. 

I think it's wonderful that you have created your charitable organization. We too have created LIAM LIGHT, and last year was our first real year up and running and to date we have raised over $152,000 for research of inherited kidney and liver disease at The Toronto Hospital for Sick Kids. We are gearing up this year and hope to hit $200,000! If you want to learn more about us, our website is at  www.liams-light.org.

I hope that Dylan continues to amaze all with his winning smile and fight, and that you and your family continue to help others dealing with this disease. It is always comforting to know that you are "not alone" and that there is support out there if you need it.