Monday, January 30, 2023
We are so sorry to hear of your loved ones accident!
Wednesday, October 26, 2022
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-
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.
Sunday, October 20, 2019
We purchased a VAN in April 2019!!!!!
Tuesday, December 4, 2018

Friday, November 9, 2018
Friday, October 12, 2018
URGENT! Dave and the Handicap Van
Friday, June 15, 2018
David Talkington and Van update
Tuesday, March 6, 2018
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?
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!
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....
Saturday, February 10, 2018
Dave's Van Vision!!!
Friday, February 9, 2018
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.
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!
Friday, March 31, 2017
Spring!!!! We made it!!!!
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
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!
Saturday, December 24, 2016
David Needs Your Help to Get a Handicap Van!
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.
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.
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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