As CREED Cheers Them On, Family Rocks Against FSGS

By Martin and Emma Monica

What do those letters mean? Well to us, FSGS means many things, an acronym much easier to say than its meaning. We had to accept FSGS for what it meant, a disease, and that was one of the hardest things we have ever had to accept.

When we learned about our daughter, Marina, in the Fall of 1999, she was one month away from her 14th birthday and life was great. Marina had just done her first Holy Communion and graduated from junior high school. She was a vibrant, vivacious young girl looking forward to being a freshman in high school. We faced what we were dealt, and chose to not let it control our lives. However, the hospital days were very hard and are still very painful to think about.

Marina was successfully transplanted in January, 2001, and only four months later we were given the news that our son, Jeffrey, also had FSGS. Jeffrey was one month away from his 13th birthday when he began dialysis. We long for the day when we can again see him take up his track and soccer games that he so much loved.

We believe it is God's way of gently breaking the news to us -- first one, then the other. We remember people telling us it would be easier having gone through it already, knowing what we were going to deal with. Well, let us tell you, it has been just as hard the second time. Yet, we wake in the morning and as we rush Jeffrey out to dialysis and apheresis, we know we are nearing transplant for Jeffrey and that he, too, will succeed. We have always believed and told the children what FSGS means to us: Family Strength Getting Stronger. This disease has definitely pulled at all the fibers of our family. But, we have never given up. We have tried to stir public attention in the hopes that with continued NephCure research they will find a cause and a cure. We always tell our children things could be worse. We have learned everything we can about FSGS, and attempt within our busy lives to not let the disease control our reason for living. We each have a purpose. Since the fall of 1999, we have met so many people who have touched our lives, people whose paths we might not have crossed otherwise.

We are grateful for the wonderful Lucile Packard Children's Hospital staff. We are grateful for the Make A Wish Foundation that has lifted the hearts of our children in a very difficult time in their lives. Marina was able to meet Rosie O'Donnell in January, 2002, and then Jeffrey met CREED this past October.

Meeting CREED was an incredible experience, and yet our children were altruistic enough to ask them to be spokespeople for NephCure. CREED has been in touch with Jeffrey to check on his progress and that has made a difference in his outlook.

Jeffrey realizes the merit of having someone like Creed supporting NephCure and we are praying that they will be inspired to help in some way. We recognize the need for research and funding, and when we are not medically occupied, we commit ourselves to educating people.

We promote organ donation and NephCure and we pray and envision a time when NephCure will have sufficient funds to find a cause and a cure for the sake of all of us who have been affected.