Tricia Gerahty, Australia
As soon as I read the email from Kelly Trout regarding Dr. Joan Han’s research at the National Institute of Health, I wanted Holly to be involved. We completed Stage 1 of the WAGR Study at the NIH, which involved blood being taken from Holly, her dad and myself. It also involved completing Holly’s medical history along with medical history on the extended family. Holly’s extended family is spread over a few states in Australia but thankfully with the internet sharing the information was made easier.
Our involvement with Dr Han has been amazing, even at this early stage of the program she was able to give us some findings from the bloods and provide us and Holly’s specialists with support. As word spread through our friends and family about the NIH program more and more people were asking how they could help us. In South Australia our empty drink containers (cans and bottles) have a .5c deposit on them. We decided to collect bottles and cans. The response was amazing! I remember one day getting a phone call from a hotel that had a week’s worth of “empties” for us. We collected over $850 from the hotel. In the end Mum and Dad ended up raising over $6500 AUD during a period of three years. We were also amazed to receive a donation of $5000 from a friend. The support and generosity of people was just overwhelming. Dr. Joan and her assistants have been in touch with us since the very beginning and have kept us up to date on what was happening with the program, the birth of Joan’s little boy, and when Stage 2 of the WAGR Study began. We were lucky to coordinate our visit to the NIH with the upcoming WAGR Weekend in Maryland. So we were set, Holly was booked into the NIH for a two weeks stay, and then we were to go to Gaithersburg to join other WAGR families for a wonderful weekend.
Our first stay was in Hollywood. From there we caught a train to San Diego. In San Diego, we went to Sea World. The highlight was a character breakfast where we had breakfast with Elmo and friends. To say she was excited that morning was an understatement, she was over the moon. Her little face lit up when she saw Elmo walk into the open air restaurant. We also managed to catch the Shamu Show, which had Holly standing up squealing and applauding. The weather in San Diego was perfect and Holly and Mark took advantage of it, relaxing in the hotel pool each afternoon. After six beautiful days in San Diego we flew to Maryland and we were on our way to the NIH. Meeting Joan (Dr. Han) & Shannon (Dr. Han’s assistant) were just wonderful. We couldn’t believe that after nearly three years of planning we had made it. What struck me most about the team at the NIH was how valued we felt and how appreciative they were that Holly was part of the research. Each procedure was explained to Holly and her permission was sought prior to any examination commencing. At no point did we feel like an appointment was rushed because another patient was waiting. Each therapist and specialist gave Holly the time to settle in before starting their examination. I cannot speak highly enough of the people that we came into contact with at the NIH–especially Dr Joan Han, Shannon, Kiera, and Mark who really did go out of their way to make us feel at home. We are still waiting on some of the final reports to come in, but thanks to the NIH and Dr Joan, we have made some adjustments to Holly’s life that will hopefully help her to avoid some complications in the coming years. For that I am truly grateful.
With our two week visit at the NIH finished, we travelled 20 minutes down the road to Gaithersburg to join the WAGR Weekend hosted by Shari Krantz and her family. The foyer of the Hotel was filled with excited WAGR Families greeting each other, an amazing site after eight years of communicating via the internet. It was so nice to finally meet Kelly, with her gentle reassuring nature settling my nerves about the weekend. I still couldn’t believe that we were in the same room as the people whose names I knew from the WAGR Group site–it was amazing. We Mums went out that first night for a few drinks and nibbles. It felt natural to sit and discuss the issues that each of us were having with our children and yet it was amazing because it just doesn’t happen every day.
Day two saw the children play together in the gym whilst Dr Joan Han and Shannon spoke about the NIH Study. Wow! This information session was amazing. It felt so good to know that Holly was part of this fantastic study that has helped her and will continue to give us and future WAGR families’ answers. The afternoon was free time to spend at the fantastic water park and the mini golf course, all provided free thanks to Catherine, John and Irma Luis. After a couple of hours swimming Holly was exhausted and we retired back to the room where she napped. That evening, Holly and I stayed in and prepared for our next leg of the trip whilst Mark went out on the Dad’s Night Out. At this point it was hard to believe we were on the last leg of our trip. We were headed for Disneyland. It was simply the most beautiful place. Holly’s’ face lit up each of the three days we walked into the park. It is a truly magical place for big kids and small.
On our flight home, we reflected on the highlights of our journey. The American people were just beautiful. I had been told that we could expect to walk down the street and not be made to feel different. This was very true and very much appreciated. We feel more empowered with our knowledge of WAGR Syndrome. Meeting the families, children and watching Holly play with the other kids is a memory that I hold dear. Our bond as a family is stronger and we will never say we can’t do something again; we have after all traveled half way around the world together.