Why Would You Attend a Rare Disease Patient Meeting?

     In the summer of 2017 our family made the first journey to Kansas City to attend a national patient meeting for Soft Bones US Hypophosphatasia Foundation and it was incredible!!! There were so many things to love on this journey.

Kansas City Soft Bones Meeting 2017 here we come!

     First of all my husband Dave has not been able to travel much long distances due to hpp. Now we found ourselves being able to travel due to hpp for this meeting in Kansas City!!! I was so happy to have my husband by my side for the first time in over 20 years flying to a destination!!! Yes it was a big deal as we never thought he would be able to do that again. He was absolutely thrilled!!!!

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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                                Could That Dream Possibly Mean Something?
                             

A gift from my friend Julie a fellow dreamer!

     Several years ago I had a dream that was so strange I thought perhaps God was trying to tell me something. I dreamed that my husband was in a Children's Hospital and that they were running tests on him for a week. At the end of the dream as the medical staff walked out of the room they said next week we start the treatment, which they said in a very matter of fact like way. My immediate thought was "What's the treatment?" and I woke up!

     These type of dreams can have you wondering was that the pizza or the potato salad I ate last night or can there be something that is trying to be communicated to me from beyond my mind and greasy junk foods? So I kind of put it on a shelf for a while and then one day I was talking to a friend and I told her the dream. We both were puzzled, especially since my husband was an adult. Why in the world would an adult be in a children's hospital and could there ever possibly be a treatment for my husbands ultra rare disease, hypophosphatasia?

Our family on the hpp journey with Dave

      We had been told back in 1994 or so that because the disease was so rare never in my husbands lifetime would there be a treatment for it. Well, we knew the doctor was telling us the truth but we left that doctors office, looked at each other and knew we were going to pray for a treatment not just for my husband but for others that we don't even know around the world that need that treatment as well.

     Several years later we began to hear about a clinical trial for a treatment and it was having positive results. As time went on it was so amazing even many of the researchers and doctors were saying it is doing good beyond what they even expected! Fast forward a few years and I am watching a video of kids before and after treatment and they are so much better that I am weeping and sobbing! My husband and I were totally amazed and so happy for all who were getting the treatment and making great progress on it! One day my husband told me that if the kids on treatment didn't have to go through what he has in life with this disease it will all be worth it even if he never got the treatment.

     As time went on I remembered the dream that I had had and pondered could this mean that my husband will someday get the treatment? Well as the trials moved forward one day we found out that some of the places that had trials were Children's hospitals and they were now opening up for adults to join trials!!! Oh my goodness! Was my dream coming true? This dream gave us hope to hold on that eventually my husband would get treatment. That day of treatment came for my husband two years ago today!
                                               

The book my dream is in.

     Its been an interesting journey to say the least but we are extremely grateful for the treatment and the positive results we have witnessed in my husbands life. I have come to pay closer attention to dreams in particular that I can't seem to shake. A dear friend of ours, Michael B. French, was writing a book last year about dreams, their interpretations, and can dreams really mean something beyond pizza or their face value. I'm honored that in Michaels book Dream Stories, he included my dream that I just shared with you along with many other dreams and interpretations. His book is available here or on Amazon.
     Today we celebrate two years of progress, breakthrough, and dreams come true for my husband, our family, and hypophosphatasia patients around the world. Rare disease patients around the world hope and dream of treatment and cures. Keep dreaming....