As we approach Amelia Joy's 12th birthday, and this 1997 holiday season, it seems natural to reflect on the past and to hope for the future.

"Hectic" seems to characterize our lives as we home school our four children..... grades 1, 4, 6 and 9 and are challenged to meet the needs of each individual child. We are also involved in our church since the Dad of the family is the pastor.

To say cystinosis has not affected our lives would be to live in denial. Administering eye drops 10-14 times daily, and meds every six hours with a meal or snack.. not to mention keeping all medicines on hand mixed, drawn up and pills counted out... is for me a challenge. Add to this ... 1) dealing with insurance difficulties   2) giving shots for growth hormone   3) and special orthodics for feet and ankle support... is somewhat overwhelming and stress producing.

However, to get lost in the clutter of each day would mean that we lose out on life's blessings and its true meaning. The struggle to balance both is real and on-going... but every now and then, I get a little nudge or a total attitude-adjustment that gives me the energy to go on.

Today, two of my children told me individually, "Mom, do you I think I have a wonderful life?" Wow! How right they are! Now cystagon/cysteamine has given our children assurance of a past, a present and as much of a future as any human can be assured of.

As cystinotics, family, and friends we must not, however, become complacent. We need to continue to educate and raise funds for research. This way the lives of our children can be of better quality and if we are allowed to dream, somwhere in the future, we may see "a genetic cure". There are many great ideas to help accomplish this goal.

Over the past five years, Amelia has been blessed with a great opportunity to participate as a case study of the University of Missouri Medical School in Columbia. In their unit on nephrology, they use her case to learn about the anatomy and function of the kidneys. She and I appear in the classroom as part of the wrap-up session. At this time we try to emphasize the importance of early diagnosis and cystagon treatment adn the success of teamwork between the physician, cystinotic, and family. The medical students have told us that meeting a real person with cystinosis and hearing about our struggles has made a lasting impression on them. We hope this same opportunity would be open to others who live in driving distance of a medical school. Many of you have other great ideas. Please contact the Cystinosis Foundation and share with them.

We have so much for which to be thankful. Thanks to all who have dedicated their lives to research. Thanks to the parents who continue to care for their children enough to make the extra efforts to reap the benefits of current research and medicines. Thanks to all who create public awareness and help to raise funds for research.

Thanks for cystagon! I am a believer because of what it has done for Amelia, because of solid research, and if for no other reason, because it is the only thing that gives us hope. We would strongly urge you to make sure that your children get the benefit of this medicine. We have seen such dramatic results through the course of Amelia's treatment.

As I close my time of reflection, it is almost 2 a.m. and time again for Amelia's night-time dose. A familiar struggle begins about now. The house is cold, my bed is warm, and my head-cold is making me feel lousy... but at least tonight I'm already awake. I pray for strength to do what every parent with a cystinotic child must do. It's a priviledge to care for our children. It truly is a wonderful life!