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!

                                                      Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

   

                                               Watching Dave walk again!!!
                                                 

Dave's sister Ann and brother in law Gary with us. 

     So we were recently honored to be speaking at Stand with HPP Pittsburgh and Dave's sister and brother in law joined us for the meeting. They arrived early for lunch and Dave decided to show them a few new things he could do since starting treatment and a lot of physical therapy over 2 and 1/2 years. So he got up and began to walk around with his cane and they were so surprised his sister asked if she could take a video. Well she did and during the video Dave began to exceed her expectations and you can hear the tears of pure joy in the background. Lots of hard work in pt, treatment that took tons of things coming together to create, manufacture, bring to market and eventually Dave to take, lots of faith and courage on his and our part to walk out this journey, as well as friends family and an hpp community cheering us on and praying for us one step at a time. So this is a bit of the story behind the video. Dave has worked so hard and has new walking stills but for longer distances he will still need his power chair as this is a treatment and not a cure. We need the van by winter. So if you would like to help us please click this link. It's tax deductible and they also participate in employee matched gifts. Please share with your friends who may be looking for end of the year tax deductions. Thank you all for your love and support! We feel it! <3

                                               

                                                      Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

   

                                                     

     URGENT! Dave and the Handicap Van 

     Have you ever run a marathon? If you haven’t have you ever had to persevere through challenging circumstances for an extended period of time? Well that has been Daves’s life with hypophosphatasia (hpp). Hpp is not a 50 yard dash, it’s a marathon. You have to train with physical therapy, do exercises, take breaks, rest, get good nutrition, medical care, tests, medicine, procedures, even surgeries sometimes, and start it all over again. At times it can be very exhausting and discouraging. Rare diseases are like that in that they are challenging, stretching, and life long. 

                                                   A recent accomplishment in physical therapy for Dave!!!

                                                         

      We have been very encouraged with the treatment and physical therapy Dave has been receiving. It has helped him to be able to travel and share his hpp story with others who also have hpp, their loved ones, and care givers. Sharing your story can be encouraging to others that they are not alone, someone else understands my struggles, if Dave can live a fulfilling life I can too! Everyone has challenges in life, one of Daves happens to be hpp. 

                                             

        A recent opportunity for Dave to share his hpp story with others to bring hope, education, and connection.

      Another marathon we have been running has been raising money for a new handicapped van purchase.The grant we applied for had too many applicants and they could not help us. We would like to thank Chive Charities for even accepting our application for consideration and we are thankful for all the can help they have provided others with rare diseases, veterans, first responders, and special education this year! 

                                                                

                                               Dave's current van that needs replace by this winter. 

      Here’s the run down of where we are at now: Through Daves Help Hope Live account we have raised $ 6,926. Through Daves Stable account we have raised $9,250. Our goal is to raise $75000 by winter to purchase a new handicapped van with all the features Dave requires. Thanks to all who have helped us so far! Please consider, like, share, and give. Gifts to Help Hope Live are tax deductible and they also participate in companies matching gifts. Time is running out so whatever funds we raise will be used to purchase a new or used van by winter!

                                                          One possibility for a new van for Dave.

     Last, but certainly not least, hpp awareness day is Oct 30. If you know of someone who is fracturing bones and they don’t know why ask their doctor to check their alp. It’s a routine blood test most people have had. If it’s low alp it might be hpp. To help us fight hpp please consider a gift to www.SoftBones.org.

                                

Do you break bones often? What’s your alp? Is it hpp? 

Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

                                    David Talkington and Van update

     

Dave in our current van "Captain Cave Man" aka "Goldie"

      Well this spring came with lots of weather and changes. Dave is working hard in physical therapy for neck range of motion and it seems to be working. We are thankful he has this opportunity and that he is making such great progress.

             

     Earlier this month we started a new season in life. We were honored to be sharing our hpp (hypophosphatasia) story of hope with others in the hpp community. Our heart is to encourage others that life with hpp is worth living even though there are some adjustments and bumps in the road to negotiate at times that are different from other's life challenges. I can't tell you how encouraging it is to share your story with others and listen to others share theirs. This is something we can do to give back to the community that has given so much to cheer us on and we are honored to do so!

                                                     

  Photo Credit- Yudelkis Exposito Ledesma 

                                                                     

     Many of you have asked for an update on the van and the fundraising for the new one. Since our last update Worth While Life  had a bowling fundraiser and raised $7000 that they deposited in Dave's Stable account for the van! We also received an anonymous check for $2500 this week for the van to the Stable account!!! We are so thankful for the love and kindness that has been poured out toward us! It has been truly humbling. The Help Hope Live account has grown to over $6030 as of today!!!  Words can not express how thankful we are to the many family, friends, and others we have not met yet that have given towards this project. Another thing you can do is share our story or consider a fundraiser to help us reach our goal. Just contact me if you are interested.

                                                   

So thankful for our family and how supportive they are! Sign by Kim Justice of Simply Sisters

       Our latest step is to apply for a grant to help with the van since, as you can see, this is a large project. We finally found a grant that could fit but it takes months for them to process to see if Dave qualifies. We were able to submit this application yesterday and couldn't be more excited. In the meantime we continue to share the Help Hope Live website for any who would like to donate financially and follow our progress. It is tax deductible, which is a huge bonus! They also do matching funds through participating companies.The website also has info for sending checks as well if that is what you prefer. We appreciate all who are praying, sending positive thoughts, and cheering us on in this marathon project that we pray will soon be accomplished as our other van is getting pretty tired. We are thankful for our old van but our season with it is coming to an end soon and we are looking forward to the huge blessing that our new van will be.

                                                 

Dave driving to his next destination! This is a great new season for us! 

June 2018

                                                     Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

   

Soft Bones HPP Advocacy: It's All About Family

Soft Bones HPP Advocacy: It's All About Family

     Hello everyone,my name is Sharon Talkington and my husband Dave has Hypophosphatasia. He and our family have paid a price in our HPP journey through hours of hospital visits and years of patiently studying this disease in every day. We've made it through hospital trips for broken bones that we have no idea how he fractured,  repeatedly requesting doctors look up Hypophosphatasia, and asking them to do some X-rays when they don't have a clue how to handle Dave's case. These experiences and more have all been par for the course in our HPP journey. Our daughters have joined us in that journey by caring for Dad on bad days, educating doctors about HPP, and helping him to get in the right position for x-rays because the techs don't realize the severity of his condition.

     In reality, Dave has been educating people his whole life about HPP by example and word of mouth. As we've been married, I've gradually joined him as I came to realize how important understanding HPP was for us and especially in the last few years through the internet, searching medical journals, as well as connecting with Soft Bones through their website, Facebook page, and groups I have learned a lot. Our daughters and Dave joke about the fact that many women are reading magazines but I am reading yet another medical journal.
     Our daughter Rebekah joined us in this journey primarily in 2008 when we discovered Dave broke both femurs 6 months apart. The first femur break we waited 8 hours to get into an ER room to be seen because we needed to go to a hospital that might have a clue what to do with him. I was totally exhausted when X-ray time came and Rebekah took over advocating for what treatment and accommodations he needed for the X-rays. She also went to great lengths in driving slow enough for the bumps on the highway as well as caring for her Dad at home the next day while I took her sister to the ER because she was sick!

                                                 Bending over backwards to advocate for HPP. 
                                         The shirt says "We are stronger in the places where we've been broken."

     Rebekah also joined me in attending ASBMR last September to advocate for HPP with Soft Bones. She was a part of the technology information that helped Soft Bones go on Facebook live the first two times in it's history! Such exciting times! Rebekah also went for coffee and food when others were volunteering at the booth and couldn't get away. She always has a heart to help and be a part of the team whatever that looks like.

                                                            Flying to Atlanta for ASBMR

     Rachel has joined her sister in advocating for HPP with social media. She is probably best known for her Pinterest Board for Soft Bones Hypophosphatasia which has almost 200 pins currently! Both of our daughters have extensive knowledge about blogging, hash tagging, and social media and have advised me about quite a bit on social media in the last few months. They helped me learn to encourage others with the knowledge of how to hash tag for Soft Bones and HPP as well as learning how to use Facebook, Twitter, and Instagram. Rachel also helps with Dave's care on rough days and she has her Dad's sense of humor as well as gift to laugh and make him laugh. When Rachel is present there is joy in the house.

     Our daughters are some of the first people to advise others on health care issues around them, jump in when there is an emergency and instruct others what to do when their loved one is in the ER or the hospital. This is because we all believe that bringing purpose out of our pain is part of what makes this HPP journey worth it. It is so amazing to be able to connect with others around the globe to inform them about HPP and what they can do to treat their disease or symptoms depending upon where they're at on the global map. Soft Bones has been a huge part of our journey and we look forward to working with them more in the next season of our lives.

                                        Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

   

                                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....

Dave's Van Vision!!!

This Honda Odyssey is a possibility for Dave to consider.

Recently we went to Columbus Mobility Specialist to check out some of their vans and get some more information about options for Dave. When you are shopping for a handicap van you need to decide on a make and model of van and then what adaptations you want to have made on the van. We have spent hours and hours looking online but it was time to look in person. There is a lot to learn and we so appreciate the journey we are on. My Dad went along with us to help us with the mechanics end and we felt like it was time for us to start getting our hands on the product to see what feels right to us. 

Here is one we looked at.

The salesman showing us a handicap accessible van.

This model seemed to be higher off the ground for a handicap minivan than the others we have looked at. There was plenty of room to enter with the wheelchair and turn around which was very nice. There was no carpet on the floor but had the rubberized flooring instead. It also had key fob entry and a bench back seat.

Dave and Dad pondering this possibility.

This was a good stop on our journey and we look forward to the next one as we search for Daves handicap van. Our goal of $65000 was confirmed again at this dealership. We are currently at $5780. Many thanks to our family and friend for helping to grow our Help Hope Live Fund to help us purchase that new van soon!  If you would like to give or help with a fundraiser please connect through this link. 

HelpHopeLive David D Talkington Fund for Van and Unpaid Medical Bills

Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

             Soft Bones Region Lead Training & Carlos Bakery AKA The Cake Boss

                                                                    Here I am a Region Lead with Soft Bones
                                                                            Photo Credit Rebekah Talkington


 Recently, I was honored to accept a Region Lead position with Soft Bones US Hypophosphatasia Foundation. This organization has helped so many with hypophosphatasia through education, connection, and research. David, my husband, has hypophosphatasia (HPP) and I remember the day about ten years ago when a doctor told us that he had one other patient with hpp and we were so excited and asked if they could arrange a meeting. They said maybe but unfortunately it never happened.

     Most rare disease patients these days are meeting through social media groups such as Facebook and it is wonderful that there are now ways of reaching out to others who have the same struggles. Just this last summer, my family discovered that meeting in person others who share similar experiences is such a powerful experience that patients want to do it over and over again once they start. It's so amazing to be rare and meet another person who is like you. It's empowering, it's validating, you have found your tribe, your family, that you never knew was out there before. Part of what I will be doing as a region lead is to help facilitate those meetings in my area, and I'm so excited to be apart of such a wonderful journey.
           

                                              Out to dinner with fellow Region Lead Dawn Gullett. 
                                                                            Photo Credit Jonathan Gullett

      To make sure I was prepared, I went to New Jersey for some training with other region leads from all over the country who bravely said yes to volunteer our time and help Soft Bones and patients connect so that those struggling know they are not alone. This was a great time of teaching, learning, and empowering connection as we saw old friends we have met before, brand new friends, and some friends we have "met online" but had yet to meet face-to-face. This time definitely makes me think of the saying "Make new friends but keep the old, one is silver and the other is gold."

                                                       I can't believe I'm at Carlos Bakery!

     After training we went out to an amazing dinner and after dinner as we were walking out to catch the shuttle back to the hotel someone said "Do you want to come with us to the Cake Boss place? It's about a five minute walk from here." What?????? The Cake Boss place is 5 minutes walk from here???? No way!!!!! Our family loves to watch the show and my husband has been saying we should go there someday! Well, I didn't wear the right shoes for this but I have to go because my husband couldn't make this trip in the middle of the winter. So we walked down the street to the cake boss place, Carlos Bakery, and there we all were for a sweet treat.

Photo Credit Jenna Aoga

     When we got there I was in awe! Then they asked me would you want to take Dave something? My first though was, what could I fly back with? We got some pics and I begged everyone please don't post this to Facebook yet. I picked out a brownie to take home to my sweet husband and took pics with sweet friends. I tucked that brownie in and brought it home to my hubby the next day and he split it with me and our two sweet daughters! They couldn't believe it! I think our daughters words were "Shut up! No way you went to Carlos Bakery!" Yes, yes, I did thanks to a trip I said yes to and some new friends who said lets go!

                                                   My favorite cake they had with Calla Lillies!

      Hey Carlos Bakery! Thanks for being awesome! I need to do a fundraiser this year as a region lead for Soft Bones. Would you consider donating or partnering with us to fight hypophosphatasia www.softbones.org ? Either way I hope to come back to one of your locations some day with my husband and daughters to get our first canoli together! Oh and the Calla Lilly cake is one of my favorites you had on display! Truly amazing! Thanks Soft Bones for the training and opportunity. It lead to a dream fulfilled in part for our family!

                                                I need to come back with the family for a cannoli!

Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.