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.