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.

   

                                                     

     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.

                                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.

Spring!!!! We made it!!!!

   

Photo Credit: Rachel Talkington

Ah Spring you have finally arrived!!! We have longed to see you come and give way to summer!

     We live in the state of Ohio, in the United States, and a few years ago winter became much more difficult after my husband broke two femurs in 6 months! Although the snow is white and beautiful and the ice can be pretty from the inside of the house it came to have another side for us. Weather changes meant increased pain with my husbands HPP, overall fatigue, and discomfort. Riding that roller coaster is not fun nor is it seen as something to look forward to. I have realized in the last few years in February I would start thinking "come on March". If we can just get to March I believe we will make it. Well we did it again.
     

Photo Credit: Rachel Talkington

       Surprisingly this winter we didn't have to shovel as much snow and put out as much salt and calcium to melt the ice off the deck, ramp, and driveway for safety for Dave. For this we are very grateful. This year was improved also due to medical treatment as well for Dave and that was a blessing as it did help decrease some of his pain and increase his mobility.

                                                              Photo Credit:Rachel Talkington

     We also received notice that another year of treatment has been approved for Dave and that is something we fought long and hard for last winter. This winter it was pretty seamless, is was wonderful to have breakthrough in an areas that before seemed like as cold and harsh as a winters wind. Like night and day! Soooo grateful!!!

                                                             Photo Credit:Rachel Talkington

     For those who have asked you can access the update on Dave through his HopeHelpLive link. Thanks to all who have helped us with that project!

Copyright SHARONNMYLIFE  INC 2017 | 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 Needs Your Help to Get a Handicap Van!

12/2016
     Some call it faith, some call it positive thoughts, and some call it positive confession but I am here to tell you we are getting a new Handicap van. How? Well let me tell you about our options.

This is a possibility for David's new handicap van. 

    First of all  our current handicap accessible van is a sweet tan colored Dodge named Goldie. Goldie came to us in 2009 when we desperately needed her. The year prior to this my husband Dave had broken both of his femurs within 6 months of each other. After this occurred he had to be in a power wheelchair all the time and we needed a way to transport that chair wherever he needed to go. Unfortunately, there are no government programs for those who are on Social Security disability to transport a power wheelchair when people need to go to other places than their home. I know it's hard for some of you to believe, but it's true and it can keep those who are disabled home-bound for months at a time.Family and friends prayed with us and looked for a handicap van, and eventually we found a used one with low milage on it. Goldie was given to us after many months of friends and family fixing it up to where the mini vans ramp would deploy properly and a new seat was put in for Dave so he could turn, transfer, and drive. We didn't complain or push for the van to be finished sooner during that time, we just prayed and trusted God had a plan and indeed He did.

                                        Goldie (AKA Captain Caveman), our current handicap van.

     Fast forward to the last few years where friends, family, our pastor, and mechanic have begun to encourage us to look for a new van. They would point this out in different ways like, "You know the van won't last forever," and "you're going to need to replace that some day." This was very kind of them, honestly, but we don't have the money to purchase one and finding an affordable van that has all of the necessities that meet my husband needs is nearly impossible. While I have looked into it, I've not been able to find grant money for one either and if you know of grant money, a program, or someone who is giving away a handicap van please contact me at sharonnmylife@gmail.com. We need the van to meet some necessary qualifications for my husband David's needs and of course pass our mechanics inspection.

      As a result of our search, however, we've found a few ways we may be able to get the help we need. If you would like to help us acquire a handicap van and meet any other medical bills for David we have set up a HelpHopeLive campaign. HelpHOPELive is a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. You can give through this link to help David and to top it all off it's tax deductible. If you work for a company that does matched giving HelpHopeLive can receive that as well for David! All checks should be made out to HelpHopeLive with the memo section noting "In Honor of David D. Talkington".

Visit this link to donate or mail to:

HelpHOPELive 

2 Radnor Corporate Center 

100 Matsonford Road
Suite 100
Radnor, PA 19087

     The other possibility we have found in this process that could help us buy a handicap van is called a Stable account . Stable accounts are tax free savings plans for disability related expenses where you can save and invest without losing needs based benefits. The cool thing is that we have opened one up for my husband and we, our family, friends, and even companies can contribute to help us get the van or other things that my husband may need but would not be covered by our income or other programs. We have started the account out with $50 ourselves. My husband can receive up to $14,000 a year in this account. We would appreciate it if you would consider giving toward that goal by Dec 31,2016! Then early in 2017 our goal is to raise another $14,000 in this account. That sounds like a lot of money but  the new handicap vans we have been looking at that would suit my husband's needs average about $60,000. Do I believe in miracles? Yes I do!

                                                              My husband David Talkington. <3

Please consider giving into my husbands Stable account. If you do give please respond to the email we have sent you from Stable or send me your email address to sharonnmylife@gmail.com so I can send you the link. The gifts to Stable accounts are not tax deductible and are not compatible with matching gifts from employers. Thank you so much for reading this, considering it, and praying that this need will be met. I will update with another post when we receive the van or when the Stable account reaches $14,000 for the calendar year. Please feel free to share this blog post!

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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.

Hypophosphatasia Awareness Day and Our Soft Bones Family

Oct 30, 2016

 

     Happy Hypophosphatasia Awareness Day Oct 30,2016 ! I first heard the word Hypophsphatasia a couple of years after my husband and I got married. He had a wrist swell up and the X-rays made the Dr think he possibly had cancer! What?!?!?! No he just had Hypophosphatasia. Here is a bit of information from the Soft Bones website 

My husband Dave! A little guy with HPP!

What Is HPP?

HPP is a condition that affects healthy development of bones and teeth, making bones softer and more likely to fracture. People who have HPP have trouble making an enzyme called alkaline phosphatase, or ALP. Without this important ALP enzyme, certain chemicals build-up and prevent calcium and phosphorus from binding together and depositing in the bones. As a result, bones can become soft, curved and fragile, and teeth may become loose or fall out prematurely.For more information, continue reading What Is HPP.

     

My husband Dave. One of my HPP heroes! 

As my husband started his journey as an infant, his Mom saw the value of communicating with doctors, getting treatment for his symptoms and continuing to search for a diagnosis. She was willing to do whatever it took. She wrote to physicians about David's case and fortunately they listened. She must have been surrounded by talented doctors because in the 1960's not many were diagnosed with hypophosphatasia (HPP). They just didn't know much about it or how to treat it. Early on in his life, he was misdiagnosed with cystic fibrosis and his Mom supported that cause through patient advocacy and fundraisers. She still had the awareness pins when she got her upgrade and went to heaven. 

Little did I know how much all this would mean until years later when Dave's wrist flared up. I told Dave that day that I was on a mission to find someone who could help him. Many years later I did, in Canada! Yes, the journey first took me to Canada through a website and a Yahoo group. Through that small but mighty group, I met Deborah Fowler who started Soft Bones. Years before, I had found a group that dealt with many disorders that impact children, including HPP.  I emailed them even though my husband was an adult, but I never received an answer. 

                                               

                                           Deborah Fowler founder and President of Soft Bones

Shortly after, Soft Bones emerged and covered a full spectrum of support for HPP patients, reaching out to prenatal hpp babies, the oldest adults, as well as caregivers. I don't know what Deborah thinks about this, but I believe God sent her to help not only her son Cannon who has HPP. In the Bible, Deborah was a leader who a man approached when he didn't want to go to battle alone. She agreed to go and the battle was won. I believe we have been in a battle for years to first find a treatment and a ultimately a cure for HPP. God chose a woman who is trained and gifted in communication and media to help spread the word and connect the dots for HPP. 

When I went to Atlanta recently with Soft Bones for an Advocacy in Action event, I saw the vision come together for the first time. Soft Bones connects the key players from top level Doctors, Researchers, Patients, Caregivers and Advocates to forward research and to  find solutions for HPP and the community. This is a national as well as international vision as we work to connect people around the globe. 

Deborah, I am honored to know you and have you as a part of our Soft Bones family. In some of our darkest hours with our most challenging battles with HPP Soft Bones has been there calling and connecting to see  if we need anything and what can they do for us. I truly don't know what I would have done without them. I believe they played a huge part in the life saving drug Strensiq being approved and saving the lives of so many HPP patients to this day.

We need your help to continue on as Soft Bones continues to fight HPP on multiple fronts including the following. 

   Your gift will support

• Educational programs and services
• Policy and advocacy efforts to increase recognition of HPP and access to necessary services and treatment
• Advances in research to further new treatment options and an eventual cure
• The Emergency Fund to support children and adults with urgent, life-threatening HPP around the world, providing them with access to physicians who have experience with HPP
• Travel grants to allow those with HPP, their families and caregivers to attend our patient education meetings

 If you would like to make a tax deductible contribution to help fight HPP please click here.

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