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.

                                 

                                          PC Sharon Talkington

 

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!

 

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!

                                                

Atlanta Trip Part 1: ASBMR 2016 Advocacy with Soft Bones

Atlanta Trip Part 1: ASBMR 2016 Advocacy with Soft Bones

     This past weekend my daughter Rebekah and I had the honor of traveling to the great city of Atlanta for the American Society of Bone and Mineral Research (ASBMR) conference and to visit our dear friends the Gregory family. During our visit we met with several people from Soft Bones, the Patient Advocacy Group for Hypophosphatasia (HPP).

Mother/Daughter selfie on the plane to Atlanta!

Outside the venue for the ASBMR conference.

    During our time at ASBMR we had the opportunity to hang out and chat with other patients, doctors, and researchers. Everyone was so caring and kind. Soft Bones, our patient advocacy group, really pulls together to get things accomplished and spread the word about HPP.

A quick "family pic" at the conference.

    While we were there I got to meet the president of Soft Bones, Deborah Fowler, whom I had befriended through the HPP community on social media several years ago. This happened to be the first time we met in person and I can't express to you the joy in connecting with her. It was also a joy to connect with the wonderful Soft Bones community of patients and caregivers that have such strong hearts despite their soft bones! It was truly incredible!

                                  It was amazing to finally meet in person "the" Sue Krug from Soft Bones.

     One of the main assignments of this weekend was to help support Soft Bones by talking with doctors and researchers at the Soft Bones booth. During this time of visiting and participating in staffing the booth I was able to meet and talk with some of the doctors and researchers that helped to develop Strensiq. Strensiq is the first treatment to ever be approved by the FDA for perinatal onset, infantile onset, and juvenile onset HPP. It's amazing to see the positive progress in the patients that are on the medication and see the hope in their eyes! 

Got to see the picture of my husband Dave at the booth!

     Soft Bones released a new tool that we were able to promote in the booth to show a difference between a toddler with HPP and a toddler without HPP as well as the difference between an adult with HPP and an adult without HPP. It’s an amazing tool and I loved seeing people’s  faces as they saw the differences in the 3D model. You can check out information about Soft Bones, Hypophosphatasia, and play with the new tool on the SoftBones website.

HPP toddler interactive tool available on the SoftBones website.

     

      After returning home from the conference, I realized this weekend helped to fulfill a promise that I made to my husband 26 years ago when he had his first symptoms of HPP during our marriage. I told him that someone, somewhere, knew something and that I was going to do whatever I could to find them and to find something that would help him. This weekend was the end and the beginning of that adventure..... 

Check back on Monday for part two!

     

Can You Fix This?

     Tonight, as I was searching my email for a blog post my cousin Connie Cameron wrote http://www.conniecameron.com, I came across an email I sent to a few friends in 2014. And as I embark on a new season in my life of doing things that sometimes I don't feel perfectly equipped to do, I find this article feeding my soul during yet another season of transition. I hope this speaks to someone else who may be in transition themselves, as I find myself moved by this particular piece in my own season of transition.

     "I thought about posting this on Facebook but decided that was too big of an audience right now. So I am sending this to three special ladies in my life. Thanks in advance for bearing with me while I reflect on some things. They say you learn something new every day and it seems that lately I have been learning on overdrive massive amounts of new info. It all reminds me of a dream where I had to buy five gum balls in order to get the information I needed. Hmmmm, perhaps that is part of this season for me.

     Today, Sharon Martin (my Pastor's wife who is leaving our church after her husband has been on staff for 32 years) walked up to me and said 'I have an afghan that my grandmother made for me (these moments when people tell me about this stuff I am about to cry and or panic because I do not know what is coming next but it usually stretches me) and the dogs have put a couple of holes in it. I know it won't be perfect but would you try to fix it please?' I said 'where do you want it after that?' To which she replied 'just to store it at my Mother-in-law's house for now.' So I said I would look at it. I honestly felt like I would cry when she told me her grandmother made it. Not sure which Grandmother made it but if it is the one on her Mom's side (which I found out later it was) it would be an interesting coincidence as that woman and her family were neighbors with my grandparents on my mothers side. Particularly interestingly, is that that specific woman sat with my grandmother while she labored for her first child until the Dr came. Life is amazing and strange at times.

     I have only been asked to do this one other time and that was by a friend for her daughter whose blanket that had been sent home from the hospital with her had been loved beyond repair. I just made her a new one and  I believe they put the loved one away for safe keeping. 

     I went to look at Sharon's afghan today and it was shades of blue with a bit of black. When I looked in our supplies I found that we had a yarn that was a light shade of blue that did not match perfectly but would repair the hole and keep the blanket from raveling to threads. This meant that I would have to creatively make a patch out of just a few stitches. Something that I had never done before, something that would not be perfect, something that would be a labor of love, and something there were no instructions to be found for (there wasn't even a tutorial on YouTube!). I prayed a prayer for the Lord to help and guide me and He did help me as I realized that the process was almost like doing it upside down and backwards since by the stitches it looked like the grandmother may have been left handed.

     When I was finished I was glad she had used different shades of blue as most yarn can not be matched years later due to fading and dye lots expiring. The experience made me think about how many matters of the heart can not be fixed. Sure they may be patched up with different material to fill the hole but it will never be the original piece exactly. It also made me realize I can not always fix everything no matter how hard I try. The afghan, like people, can begin to unravel if not repaired and as much as Dave and I have tried to help people and pray for then some of them are still broken. Some have been healed, some have moved to heaven, some still need freedom, and some are left without a mom on mothers day. Some are still a mess and all I can do is all I can do and it's all the God wants me to do. 

     I am reminded of an illustration we had during a marriage conference. They took yellow play dough and blue play dough and they mixed it together about 2/3 of the way. Then they told us to pull it apart and completely separate the blue from the yellow. It was impossible. People's lives are so mixed up at times and even when you try to help them so many of them want more from you. It seems at times it is never enough, even though you feel you have layed down and poured out your life. I fixed the hole in the blanket today. I can't always fix the hole in peoples hearts but some of them...they really don't want you to or even God to. Thanks for letting me write this. I love you all! I believe I am hiding in the shadow of His wings and He is my defender."

An Alternative for Christians to Obamacare

     Lately I have had friends, and friends of friends asking me personally or posting on social media trying to find an alternative to Obamacare. There are many reasons people are looking for solutions and so I have decided to post on my blog about it to help others who may want to know about examples of alternatives to Obamacare such as the one I have been using for several years called Christian Healthcare Ministries (CHM).
     Christian Healthcare Ministries is a group of Christians that share medical bills by committing to giving a certain amount every month that is used to pay for other members medical bills. Mine is currently $150 a month at the Gold level but they do have cheaper options. There is a $40 yearly fee for administration and an optional program you can add called Brother's Keeper for about $25 per quarter ( this is based on the needs at the time so it varies. I think the lowest mine has been in 3 years is $4 and the highest $26). I highly recommend you get Brother's Keeper if you join CHM. They also pray for others medical needs, bills, and sometimes send them cards of encouragement.
     For many years I was afraid to take the leap of faith to sign up for such a program as it is not insurance and there is no guarantee that your bills will be paid. I have been thinking about it though, doesn't it take faith to purchase insurance? Anyway, upon researching this though, when my health insurance premiums became unaffordable for our budget, I discovered some friends or friends of friends that had used Christian Healthcare ministries with stunning results! My brother in laws Pastors wife over 30 years ago had cancer and he told us that every bill was paid for! In the last few years a dear friend of ours,who is a member of CHM, had an accident and needed surgery. He had that surgery and every bill was paid! Most recently I have a family member who has been ill for months and they submitted the bills along with applying for discounts at the hospital where they had testing. The hospital gave them a discount and it was over $500! $500 is what CHM considered their responsibility personally for this incident so that $500 was met by a discount!!!! So no out of pocket in the long run for them! I love that! In the past they paid hundreds of dollars every month for insurance with a deductible of thousands of dollars and they got next to no benefit from their insurance. They are thrilled with CHM and are so happy at all the money they have saved on insurance the last few years as well!
     It also feels good to know that every month the money you are giving helps others directly. There are many other aspects you can find on their website and if you have questions you can contact CHM or message me.You currently get a free month if you enroll online and use the code RDL1. The other thing I like about them is that if you mention my name and member number I get a free month of CHM after you pay for your first 3 months. My name is Sharon Talkington and my member number is 156885.  I hope this will help many get the help they need at an amount they can afford. For information on how this meets Obamacare and also tax information see CHM website. http://www.chministries.org

Dreams Do Come True and Miracles Happen!

     Over 20 years ago an endocrinologist told my husband and I you will never see a drug for the disease you have called Hypophosphatasia in your lifetime. Well we understood the Dr and what she told us was true based upon facts at the time but we chose to leave that office and pray for a miracle. We were asking that the impossible would become possible not just for my husbands sake but for others around the world that die or suffer from Hypophosphatasia on a daily basis. We had many family and friends who started this journey of prayer when my husband was born and many who have joined us throughout the journey of our lives or for just a season and we are truly grateful for their prayers, love, support, and for cheering us on!
     This week not only did a miracle happen but a dream also came true. Several years ago I had a dream that my husband was in a children's hospital for a week and they were running many tests. At the end of the week they told us that next week they would start the treatment and as they left the room I asked, "What is the treatment?" There was no response. You know that feeling when you're reading a book and you get to a really great part so you want to read the next chapter but for some reason you can't? Well this dream was a great chapter and I thought it was so weird that it had to be God telling me something. Hold onto your faith...hope a little longer....pray and believe a bit more... I told a friend the dream and she commented on how strange it was. It was pretty strange in my mind but time went on and I found out that there was a drug trial. It started around the time I had the dream, only babies and children were primarily the ones being put on the drug, and it saved lives! I cried tears of joy when I saw the first pics and videos of babies and children whose lives had been improved by the drug now known as Strensiq by Alexion Pharma. This was a miracle that we had been praying for and what I believe my dream was about! This week the FDA approved the drug Strensiq for perinatal onset, infantile onset, and juvenile onset Hypophosphatasia. There are many pieces to the puzzle and people who contributed to research, testing, and many families who paid the ultimate sacrifice to keep trying for a treatment. Thank you just doesn't seem to do it justice but we are truly grateful for all things coming together that have brought us to this day. Today, Oct 30 is Hypophosphatasia awareness day. Thanks to Deborah Sittig of Soft Bones here is some information she shared about  how to help us spread the word. Please feel free to share this post.

"Today is HPP Awareness Day! 

HPP HEROES, UNITE!
Join the Uncommon Strength Global Mission

UNCOMMON STRENGTH CAMPAIGN
As a HPP Hero, your mission is simple – unite and inspire those impacted by hypophosphatasia (HPP) around the globe and raise global awareness for HPP.

Living with or caring for someone with HPP isn’t always easy. It demands a great deal of courage and inner strength day in and day out. It also takes a bold unified effort.

On HPP Awareness Day (October 30th), we’re encouraging the world to join the fight. Whether it’s a caregiver, a friend, a family member, a co-worker, or your child’s teacher, let them know about this important cause. Together we can have a huge impact. HPP Heroes, Unite!

WAYS YOU CAN TAKE ACTION
Ø Support HPP advocacy organizations around the globe by signing their international petition to officially recognize October 30th as Hypophosphatasia Awareness Day.
Ø Encourage friends and family members to visit the Uncommon Strength campaign website – www.EveryDayWithHPP.com – and join the HPP Hero community.
Ø Build your own personal HPP Hero on www.EveryDayWithHPP.com and encourage your friends and family members to do the same.

Visit our Soft Bones website for more information www.SoftBones.org

www.EveryDayWithHPP.com"

Savin Money on Supplements Post

      So lately I have been thinking about different ways I save money and how many of my friends I have shared these with but many i have not sooo here I am to help save you money whether it benefits me or not. ;)
     I have a couple of places that I order supplements online that save me quite a bit. One is www.pureformulas.com They have fast free shipping, the same day if ordered by 5pm EST, they have free returns, and their products are 100% guaranteed.I like that they carry quality brands such as Apex Energetics and Pure Encapsulations. They have a special that if you use my code RFYJXK you will save $10 off a $50 order.( I will save $10 off an order as well if you do but I would tell you about them even if I did not lol) 
     Another place I save is www.puritan.com They have free shipping in the US and I like their price on the NOW brand of progesterone cream http://search.puritan.com/search?view=grid&w=Now+Progesterone+Cream&x=0&y=0 Check them out! More to come on saving on supplements in my next post.
     My favorite website to order supplements and natural foods is www.vitacost.com  If you use this code http://goo.gl/GnpWDr you will save $10 and so will I! I started ordering from here many years ago and found a supplement that was about $20 cheaper than I was paying!!!!! I have been saving money ever since! Their Vitacost brand is also been great as well on most products I have ordered. I love their warranty of money back or replace the product on anything they carry if you don't like it. I believe shipping is free with an order of $49 or more and it generally arrives in less than a week. 
     Happy savings on your health shopping!