2001 NUCDF CONFERENCE - Houston

A FAMILY EXPERIENCE

 By Tresa and Steve Warner

©2002-2005 NUCDF

The 2001 NUCDF conference in Houston was an exciting and informative mecca for parents and children. Our family vacation will be one that we will remember for years to come. What a great opportunity for parents and professionals to brain storm and exchange ideas to help fight the battles of urea cycle disorders. One can spend the entire year researching what we learned in just two days' time.

Being the parents of a 3 ½ year old girl with OTC and a 1 year old son, we greatly anticipated Lexi being able to meet and interact with spectacular children just like her. We prepared Lexi for weeks to what was about to happen in Houston. We were dealing with a newfound curiosity about "why do I have to eat this food, why do I have a G-Tube, and are their other little girls like me"? Our trip to Houston not only answered the parent questions, but also for the first time Lexi was able to witness that there are children "just like me!"

Once we got situated in the hotel room Friday afternoon, we could not wait for the reception to begin that evening. Parents, children, and doctors gathered with curiosity and became acquainted. Those of us who had attended conferences in the past relished seeing each other face to face rather than through e-mails and phone calls. First-timers anxiously looked for those who were like them. This was a great icebreaker for NUCDF members and set the stage for what would be the best conference yet.

Saturday morning we were up with the sun as the little ones enjoyed breakfast with their parents before heading off to what would be the highlight for our daughter and son -- conference provided daycare! Daycare does not justify the experiences and memories Lexi would bring home with her. This was the opportunity for our curious 3-year-old to see first hand that there are many others just like her -- others that love the same foods, take medicine, and have g-tubes -- not to mention we believe that Lexi met a life long friend in Scarlet.

The parents, full of questions and thirsty for information, assembled in the conference room ready to take in every bit of information that would help in the care of their children. We listened carefully as the esteemed panel of doctors willingly conveyed to us the truth about what it takes to control a urea cycle disorder. We were given the latest update from the Urea Cycle Disorder Management Consensus Statement and information on issues from developmental delays and feeding problems to the newest research on gene therapy. We found this type of forum to be exactly what we as parents needed to feel confident in treating our children. The doctors allowed the families to ask questions and to also hear the questions of others. As we broke for lunch most of us were overwhelmed with the amount of information that was given to us.

The conference provided a wonderful lunch that was both delicious and low in protein. Following lunch we resumed the presentations. After the panel finished their topics, we broke into groups for discussions and one-on-one questions with doctors, which pertained to each of us. To be able to ask the expert questions that relate specifically to your child and to hear what was on the minds of other parents was truly invaluable to us. So off to collect our kids from the daycare, and back to our hotel rooms to freshen up and go to dinner. After contemplating the many options that Houston had to offer, we decided on the sports bar in the hotel. Our brains were still buzzing with information, the kids were tired and ready for bed, and our stomachs growled with hunger.  Two good samaritans, Robert and Laura Moody, whose son has OTC, came to our rescue. One took Carson and the other took Lexi. WOW! There we sat just the two of us, to finish our meal and reflect on the day. What a great network of friends and parents the NUCDF is. Big thanks to them!

Sunday morning found most of the parents exhausted from the vast amount of information given over the weekend. We met for an informal breakfast before heading home. This was the opportunity to exchange addresses, e-mails, and take those last minute pictures. The children were still beaming from the friendships they had made.

As a family, we enjoyed the opportunity to pick the brains of those doctors dedicated to the treatment of our children. Meeting families with similar issues is what made that weekend the most rewarding. Knowing that we are not alone and that there is a larger family waiting to embrace each newly diagnosed child -- as parents what more could we ask for.

Thank you to the outstanding doctors, sponsors, and the NUCDF Board for giving us your gift of knowledge so that our children may live healthy and happy lives.