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.

Copyright SHARONNMYLIFE  INC 2016 | 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.

When Your Bestie Is Nominated For Woman Of The Year-Oct 6-8, 2016

     Recently my bestie, Kelli Sears (she is currently launching a new blog, check out her Twitter and Facebook for more details), called to say she had been nominated along with 6 other women for Woman of the Year at Drenda Keesee's  Love Encounter conference. She was amazed but I wasn't at all. Why? Well anyone who has met Kelli Sears knows that she is absolutely incredible. She is loving, kind, and always giving to others. She was humbled to even be nominated and I eagerly told her I was willing to attend the conference with her if she would like. She was happy to have me along with her for the ride and we got to enjoy the experience together!

                                                (Photo credit: Stephanie Sears)

      The conference was amazing! Everything was done with the highest degree of excellence to make sure that every woman who was attending had everything she could possibly need for the conference. There was breakfast, snacks, water, lunch, great teaching, and lots of joy not to mention the love of God that was clearly present with us.

      The music was amazing and was played by the band Open Heaven from their new album release, Lion of Judah. The speakers gave some amazing talks on the simple, difficult, and just plain funny stuff women go through while tying in encouragement from the word to keep moving up! We had lots of fun as Drenda talked about the Jesus movement and encouraged attendees at Love Encounter 2016  to dress from that era for the conference. We got some great pics in front of a hippie van that was at the conference and several of Kelli's family joined in the fun with us!

(Photo Credit: Megan Mizer)

     On Saturday morning Kelli had to be there early to get her makeup and hair done with all the nominees, as well as put on the new outfits that were provided. It was inspiring to see the nominees in awe of the fact that they were nominated for the award. Kelli even said, "Who am I that I am here among these other women? I am so humbled."

     It is my belief that she was nominated because like Esther in the Bible, Kelli has come into the Kingdom for such a time as this. As a believer in Jesus, she is an amazing daughter, sister, wife, mom, Mimi, foster mom, home school mom, school psychologist, missionary, business owner, and amazing friend.

   

     I met Kelli Sears over 20 years ago and initially thought she was too busy to be my friend. However, a few years ago we met over a prayer and a vision which led us to begin to talk on the phone, capitalizing on her driving time to schools to check in with each other frequently. We pray, we laugh, we talk, we cry, we dream, we encourage one another, and we celebrate great times together! This precious time continues today as we journey alongside one another.

 

The last couple of years have been different for us with Kelli launching her new business Navigating Autism Plus. Due to her busy schedule, she is using driving time to return business calls limiting our contact. However when we are together there is still that kindred spirit friendship that is oh so sweet!

     Kelli has been through many difficult, traumatic things that could have derailed her over and over again and yet her spirit has grown strong and resilient. Putting her fighting spirit behind the cause of helping children everywhere, protecting them from abuse, neglect, and learning how each one of them learns best to help school leaders embrace their unique style!

    

      On Saturday of the conference when they called all the ladies out one by one their inspiring stories were shared from the platform. When they finally called out the name of Woman of the year 2016 Kelli Sears was the name they called which made the crowd cheer enthusiastically! Kelli was surprised but also happy which absolutely thrilled me as I watched my friend who has spent her adult life serving so many over herself be honored in such a wonderful way. Congratulations my friend! The ride has just begun and it's going to be a great one!

   

(Photo Credit: Stephanie Sears)

      Stay tuned to be connected to my friend Kelli's new blog and the next chapter of her story......
   
   

   

Copyright SHARONNMYLIFE  INC 2016 | 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.

    

Guest Post Update From My Husband Dave

Guest Post Update From My Amazing Husband Dave

My husband Dave just celebrated a birthday Wednesday and this is what he wrote in response to all his birthday wishes on Facebook.

Dave is a funny guy and wanted to share some big news with our family and friends!

We hope you share in our joy of celebrating life!

     "Wow! Where do I begin? I want to thank all those who have wished me a happy birthday! It's amazing what the Lord has done in my lifetime...it wasn't too long ago that I wondered if I was going to make it to 50 let alone to today. I know that it's been the goodness of God. I also know it's been the prayers of my parents, siblings, aunts and uncles, other relatives, and that many of you, have done on my behalf. Although the disease that I deal with should have been fatal even through my childhood years, here I am. I definitely have hope in my heart! Hope for today, tomorrow and the future. I say that from an interesting position. As many of you know, I have been in a wheelchair since 1995...due to the ultra rare disease I have, called Hypophosphatasia (HPP), which is a musculoskeletal disease. Multiple breaks, muscle weakness, pain etc. But last fall the FDA released the only life saving drug to help with the symptoms. This is not a cure, but it has saved many babies that would have died otherwise. I started the drug in March. The drug basically is supposed to replace an enzyme I'm missing in my DNA. Again, It's not a cure..but it is the next best thing! What does it do for me? It's really helping me to have a better quality of life... This drug is something my doctors said I'd never see in my lifetime!!! They were happy to be wrong....and so am I. I'm such a blessed man. I have a wonderful wife and children, great family and friends, a great HPP family, great Pastors, staff and church family! People who have stood with and encouraged me and my family during the easier times and when I've (we've) been battle wounded and worn. Thanks again.....from a grateful heart.....Dave 

It is I who no longer lives but it is Christ who lives in me!"

copyright SHARONNMYLIFE  INC 2016 | 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.

Atlanta Part 3 Gregory Family, Linked Up Church, and Doing Life together

     At the end to our trip to Atlanta we connected with our family, the Gregory's, to do life with them and attend the church they Pastor, Linked Up Church. Our paths connected many years ago in Oklahoma and we thank God every day for giving us such a precious relationship with the Gregory's! To be with them following the ASBMR conference with Soft Bones to share what is happening in our lives as well as the latest news on my husbands bone disorder Hypophosphatasia was a wonderful experience for my daughter and I. The last few years I have not been able to travel far from home due in part to my husband having HPP and his health being impacted by it, so getting to see the Gregory's was truly a dream come true!

                                               Trish with one of her babies Rebekah <3
      

      Being able to attend church the morning after ASBMR twice in one day and experience the presence, power, and love of God in Linked Up Church was such a peaceful and strengthening time for me. The praise and worship was powerful and I absolutely loved every minute of it! The message delivered by Pastors Joel and Patricia Gregory was a special one as they encouraged all of us in the basics of the faith while they began their 40-connect campaign with the church family. One scripture they shared which powerfully impacted me was James 5:16b "The prayer of a righteous person is powerful and effective." I had already been thinking upon this scripture in relationship to my daughter and I's trip as so many things we have prayed for Soft Bones, HPP patients, Hypophosphatasia, Linked Up Church, as well as the precious Gregory family have been answered. Our Father God has truly been a wonderful father to us all!

                                          So grateful to spend time with Trish and the family!

     The time we spent with Trish and Joel was invaluable as they listened to us share about the conference. The Gregory's have been a vital part of prayer for a treatment for HPP for many years and celebrated the great news of breakthrough on the front with the FDA approval of Strensiq™ for Hypophosphatasia. They encouraged us to continue sharing about our journey which gave me another nudge to return to writing this blog and for that I can't thank them enough!
       I felt like being with the Gregory's and spending quiet time processing the weekend and the journey God has sent us on with HPP was extremely valuable to planning our families future. The love and care from the Gregory's and Linked Up Church was so tangible it was a  precious time of fellowship and rest for myself and my daughter. We can't thank you all enough for all the love you showed us! 

copyright SHARONNMYLIFE  INC 2016 | 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.