We are so sorry to hear of your loved one’s illness!

 We are so sorry to hear of your loved one’s illness! Please know first and foremost we are lifting them, you, and your family up in prayer.

                                            

                                                  PC Sharon Talkington

 

Second, I see there is a GoFundMe set up. Please make sure they talk to a social worker and apply for uncompensated care. It can discount your hospital bill up to 100% and sometimes doctors will match that discount. GoFundMe can be a blessing but if the person is on a government program such as Medicaid or SSI, it can get complicated.

 

Here is an article with more information, in case you are interested.

https://helphopelive.org/is-fundraising-taxable-personal-income/

                                         

                                                      PC Sue Krug

 

I would encourage you or someone else in the family to check out setting up a Help Hope Live campaign. Help Hope Live is a trusted medical fundraising nonprofit that provides all of the support necessary to be successful in your fundraising. Because it is a nonprofit, donations can be tax deductible and you are also eligible to receive matching gifts from companies, which can add up quickly.

 

We have a campaign for Dave for unpaid medical needs and it has been a major blessing! We can’t say enough good things about Help Hope Live!

                                  

                                                  PC Sharon Talkington

 

Lastly, whether you start a Help Hope Live campaign or not, they have resource guides that are extensive to help you find resources in this time. Here is a link: 

https://helphopelive.s3.amazonaws.com/uploads/2020/07/HHL-Illness-Resources.pdf

 

 

 

Giving Tuesday Now May 5 

     Tuesday May 5 is a Global Day of Giving for showing unity and generosity in this season and that #hopeisnotcancelled! Participation can include donating to a cause you care about, helping a member of your community directly, letting your voice be heard by advocating for an issue that matters to you, or getting involved with a special nonprofit cause as a digital volunteer.

                                        

                                              

  One of our favorite pics and some flowers recently sent by our daughters. 

     Hope Help Live has encouraged us to share Dave’s page and needs during this time. This is humbling at a time that so many have needs. If you have a need we would love to pray with you and point others in your direction so please comment or pm us if you feel comfortable. In the last few weeks we have shared from what we have with others such as hand sanitizer, food, and other items people have shared with us so generously. We are so grateful for our community! But we have also been told others are looking for places and people to give to, so here we go. 

We have two projects as goals to better Dave’s quality of life. One is a generator for power back up at our house, because many things Dave needs require electricity. From refrigerating his medicine, to charging his power chair, to his lift chair, and adjustable bed these are all items that contribute to how Dave functions on a day to day basis. We were reminded of this need as Daves medication refrigerator died during this COVID19 season and currently can’t be replaced due to them not being able to deliver safely. It has been apparent for awhile but now more than ever we really need back up power now for our home and fridge in case the power goes out. Estimated cost of generator 2 years ago was $6900 . We have requested an updated estimate from company linked here and will keep you posted: https://www.generac.com/

                                         

                                          Just one of the possibilities with Generac.

     In the last few years we have been honored to travel and share our story to help others understand our rare hpp journey and help facilitate hope in others. We continue to dream of doing more of this in the future as well as though the internet currently. So the second project wehave is adding power to Dave’s manual chair, specifically a Max Mobility Smart Drive MX2 plus push tracker.(http://www.max-mobility.com/smartdrive#videos ) Due to Dave’s changing abilities when we travel, or go longer distances, he uses his manual wheelchair and if he could push himself and then kick in the power when he gets tired or can’t push himself that would be wonderful and better for his health. There are times when we travel that we can get someone to push him but other times they are short staffed or we have no time. It’s at this point I have to push him and juggle our many bags as well, which can cause us more stress and exhaustion. I want to support Dave’s best health and independence, and I know he would appreciate being able to get himself around more easily. Estimate is $7000 new, and we have been told that insurance will not pay for it.

                                                 

                                                                     SmartDrive MX2 plus push tracker

     We last posted these on our Hope Help Live awhile back and $1500 came in to help which is wonderful and we so appreciate it! Please note that your gifts are tax deductible through Help Hope Live. https://helphopelive.org/campaign/12330/ You can currently use an e-check (they are temporarily covering the third party fee) but are unable to mail checks currently due to COVID.

Thanks to all if you read this far we believe that our telling our story brings hope to others. Thank you for sharing, liking and inviting others to join us, giving, loving us, and cheering us on in this chapter of our lives. We truly believe the Best is Yet to Come!

                                                

We purchased a VAN in April 2019!!!!!

     I apologize for the delay in this post. We did a Facebook live for the video reveal thinking it would be easy to share to other places and it was not. I had to learn some tech stuff to get it done and totally forgot to post in the learning process but here we are now yay!!! Please forgive the delay!

                                            

     Finally we were able to find and purchase a handicap van! It’’s a 2010 Chrysler Town and Country Limited handicap van. It has the side ramp and drivers seat like we needed. We and our friends, family, and a sales person literally have looked all over the US for this van and we finally found it in Ohio. It also has many features on the van that were important to us like a back up camera for Dave since he has limited mobility in his neck. We picked it up  and have been in awe ever since. Dave and I often say we are living the dream as many things we thought would never happen are happening in our lives. Well this is one of them. 

     We want to thank our Good Good Father God, our family, friends, spiritual family, HelpHopeLive.org Worthwhile Life Foundation, and anonymous. We are overwhelmed  with your generosity and feel the love! Thank you, thank you, thank you for making a huge positive impact in our lives! 

     If you wish to give to Dave’s Help Hope Live or Stable account to help with unpaid medical bills, medical expenses such a power for his manual wheelchair that we are looking into, house repairs, van repairs, things to help with Daves life. Please contact me for the Stable account info which gifts can help us travel to things like hpp meetings to help us manage Dave’s diagnosis best.  Contact me if you have questions. Many thanks again to all who gave, shared, liked, and commented. We can’t thank you enough! <3

     

                                   La Jolla Soft Bones National Meeting 

                                           

                                                        Ready to fly to California! 

    How do you describe a rare disease patient meeting? Well, I had the opportunity to write a blog post on it two years ago (link here) and have found that it is always difficult to sum up the whole experience. As my husband Dave and I return from our third national meeting once again I am pondering what to tell others about the bond between hpp patients, families, loved ones and caregivers.

                                               

 Our friend Sue. I have learned so much from her about hpp! 

     They say when you find your tribe (community, family) to love them hard. We are doing the best we can to walk that out step by step and day by day. When we watch new patients at meetings we are delighted to connect, listen to their stories and answer any questions they have. They say everyone needs to be fully loved and fully known. I think that’s a huge part of it. They feel more fully known. We feel more fully known. Others who we sit across the table from hear us and say yes that’s how I feel too! Do you know that I’ve come to fully realize? Knowing and understanding why there is pain, why there is difficulty, and what can be done about it is validating and empowering as well as comforting! We may not understand the whys of everything but understanding one or more new facets about your diagnosis can be a comfort. I’m not crazy, it’s not all in my head, there is a reason why I am experiencing this. Then if there is treatment you can hear about and see others that are on treatment and those who are not, weigh out the benefits and risks to make an informed decision about your available options. These moments remind me of a quote from a favorite show of mine, Call the Midwife:

                                                “None of us have ever truly walked this way before

                                                 But if there is no map, no route, no arrowhead to follow

                                                 There is sometimes a star.

                                                 An we do not make our way without companions

                                                 As the road unfolds, we travel side by side

                                                 And share the shift from darkness into light”

     

                                                    Our friend Sally and I on break! She's a gem!

     There is also laughter! Laughter over the things that only a person with your flavor of rare would get. These are your people, family, community, and they really do give you with a sense of belonging. These are the people you talk with when your doctor does not know what to do, the medical professionals don’t know what to do. Often times only you and your inner circle know the hell you’ve been through and yet you meet people who get it when coming to these meetings. 

      Many sacrifice their money to make that one trip, pain in their bodies, perhaps risk a fracture to make that connection, get that education, and be empowered to advocate for yourself and others in your community. Forever changed, never the same, and encouraged to grow to your full potential. Do it afraid, go to a meeting, make the connections, be vulnerable and tell your story, fuel your tank for the journey. It’s not a sprint it’s a marathon. Pace yourself, and keep this quote in your heart:

“Sometimes life is shattered in an instant and all our certainties are savagely stripped away. Questions become our weapons, answers are our only hope. Without them fear engulfs us. Love and each other can be all we have

Love can not always save us but it can be the reason we fight 

Then love becomes the wound that bleeds the space to be filled 

The emptiness that echoes into silence”

-Call the Midwife

                                                           Copyright SHARONNMYLIFE  INC 2019 | 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.

                                              Happy Mother's Day Naomi!

      My Mom is an amazing mother and I wish her a happy Mothers day today but this blog entry is about my Mother-in-law or what some call their Mother-in-love now.
     I met her a little less than a year before I married my husband and she was so kind to me. I believe she knew that her days with her son single were numbered and she treasured every moment with him that she could. I didn’t understand that at the time, but as time has rolled on and I have matured and understand a little more of life and my husband’s story, it’s starting to all make sense.
     Naomi Mullins Talkington was one brave woman. She was strong, courageous, loving and a fighter when it came to getting the medical care for her son that she desperately loved, my future husband. I can’t thank her enough! I don’t know the full story but in the last few years a few more pieces of the puzzle began to unfurl as treatment for hpp was approved and we began a journey to find out could adults get this treatment? What would it take to get this treatment?
                                   

                                                                   Dave's Amazing Mom Naomi!
                                               
     Soon we found out that it would take proof that you had hpp as a child prior to age 18 years old. Well at first I thought we don’t have anything like that as my husband’s pediatric records were destroyed before we could request them shortly after we were married. We were young and Naomi encouraged us to call and get them and they said they were gone. The whole office records had been destroyed. We were disappointed but had no idea what relevance it could be in the future such as we began to realize in the fall of 2015.
Then I remembered something. After Naomi passed my sister in law, who is a nurse, handed me a box. She had graciously done some initial sorting of things in the house, since we lived out of town, and said these were some of David’s things.I can’t thank her enough for keeping these things and passing them onto us! Honesty they were still in the box and I thought “where is that box?” We had moved several times and it is nothing short of a miracle that we still had it!
    
      I found the box and began to go through it. From his birth announcement, where it listed his very small weight and her reassurance that he would be fine, to cards welcoming him as a baby it was there in the box. Then there were the letters she had written to doctors and doctors had written back to her. Before the internet in a time were very little was known this mother was leaving no stone unturned to help her child receive the best of care as far as she could see and find! She was writing researchers that were on the front lines of hypophosphatasia and how do we treat it. Her tenacity was persistent and she was resilient and firm in what they could do and what boundaries she drew to care for her precious son. She was a trailblazer in advocacy and the letters and documents she so preciously saved I don’t think she ever dreamed they would be an inheritance key to lead to treatment for her precious son once she was long gone.
So today I honor my mother in love for saving my husbands life and health through her foresight to connect and correspond with some of the leading doctors and researchers of his childhood! Happy Mothers Day in heaven Naomi! I love you!
     
                                    Copyright SHARONNMYLIFE  INC 2019 | 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.

   

                        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.