Kansas City Soft Bones Meeting 2017 here we come!
So our two lovely daughters joined us to help us learn to travel with the wheelchair, luggage, and all those bags! We flew SouthWest and greatly appreciated their accommodating David's abilities at the time including wheeling him onto the plane in his own wheelchair so he only had to get up and take a couple of steps with his cane and sit in the front row. I was also allowed to sit right there with him. It was so sweet to hold hands with my sweetheart on the flight. He is such a people person and loved making friends along the way while we traveled. We were even honored to sit next to a famous person on one of our flights, but more about that in another blog post.
So we made it through TSA, learned the value of having a person to push you through the airport, and appreciated the fact that we could be traveling all together in this season of our lives. We had so much to look forward to such as learning more about hpp, meeting people we had only chatted with on social media, spoken to on the phone, and to see the many patients and families who are being positively impacted by treatment for hypophosphatasia.
Traveling with my sweetheart! <3
As we checked into the hotel it was surreal as we began to meet others that were there for the meeting. Honestly so many of these people feel like family to us. Some we have met before and others we meet and the connection is like you have known each other all of your life. I found myself having goosebumps on my arms over and over again and thinking this is absolutely incredible. We would see children that their parents had posted pics or video on social media and they had been unable to walk and now they are. They were not expected to live and there they were. There was running and dancing and playing. There was a friend who was walking with a cane that could not do that before. I felt like everywhere I was looking there were miracles. I cried but the tears were tears of joy. My husband got to meet the first person that I ever called on the phone with hpp. He got to meet others that I have talked to and tried to help at times. Soft Bones provided a travel grant for us to come and friends helped us with the rest. We learned tons from other patients as well a doctor who spoke, a nutritionist, Deborah Fowler who shared Soft Bones vision, and it was an absolute honor to be there.
Falling in love with travel again and patient meetings. <3
After this meeting, and as a result of us learning, Dave and I have been honored to attend a couple of Stand with HPP meetings as well and I think some of the benefits of attending either type of meeting are the following.
1. Connection with other patients who get it! They understand some or all of the difficulties of your hpp journey.
2. Those patients are perhaps now new friends and family that you will journey with for the rest of your life.
3. You can share tips of how you managed and coped with hpp and help someone perhaps not have to go through all the difficulties you have.
4. Learn about hpp from healthcare practitioners.
5. Learn about the latest in hpp research.
6. Learn about studies in hpp that you may chose to participate in.
7. Network to help all with hpp find treatment and ultimately a cure.
Patient meetings are a game changer in many patients journeys find one and make it a priority to attend. Clear your calendar as this is worth it!
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