How WAGR Weekend Becomes a Home…
Our first visit to the WAGR Weekend turned out to be one of the most amazing experience in our life. We are the Katsumoto family from Japan. Asahi is our son with WAGR syndrome. I would like to share what we felt from our trip.
We were also worried about our traveling expenses, but the IWSA financial assistance was a big help. I would want to prefer [suggest financial assistance to] any family (especially traveling over seas) who’s also worried about the costs.
The hard part of the trip was the flights. It took about 10-12hours. Asahi is still 20 months, it was a very long flight. He was crying a while and we knew it was annoying the passengers. It was important for us to ask any available front seats when we checked in. The airline company was kind enough to arrange seats we preferred. Sometimes it is hard for us to say our children has handicap, but make sure to know the special services you can receive.
But the most of the time, we were just excited to meet everyone! The best part of the weekend was to meet many families. Especially I loved the MOM’S NIGHT OUT. It felt like gathering up with old relatives. I was moved to tears the most of the time. To hear stories from senior moms made me image of how my son will grow up. It was a very relaxing time. It felt good to speak to people who knows your feelings exactly. Everyone at the weekend gave me courage and hope. There were some language problems, but it felt like communicating with heart to heart. It isn’t easy to travel a long way with our children, but it is worth it. It will be the best moments for your child and family. For everyone, it will be a refreshing and heart-warming time. I recommend it. My hope is that the medication [research and treatments] of the WAGR syndrome will make a progress and treated equally in every country all over the world. We are setting up a group called JWSA (Japan WAGR Syndrome Association) for WAGR families. Our mission is to find any Asian WAGR families feeling like we did before. Also translating information is very important. I’d like to thank you for the IWSA members to learn us a way [help find a way] to make that happen. WAGR weekend is now our place like home. Hope to see everyone soon.