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Thursday, February 2, 2017 - 07:23
Six Years Home and Still His Miracles

I pray you have the endurance to stick with this story and see God's amazing love and grace to all of His creation. This story just might release you from the burden of who's in the White House or who is or isn't allowed in the country or any of the other current distractions. This is a story of God's love for all the world. And it starts with my Kelsey's journey through her life.Some may say this is just an attempt at this old man's search for...
Saturday, September 24, 2016 - 19:32
Yesterday was Tracy's birthday. In my email inbox was an article that Karly's doctors wrote about her transplant as it was the first, quite the big deal, and even more so since it's success. The article is in press, so I cannot share it with you all yet, but is was such a huge blessing. Just 7 years earlier on that same date, yes, Tracy's birthday, the New England Journal of Medicine published the first DOCK8 article sharing the stories of 11 people, 4 of whom had already died, and 2 being...
Sunday, July 31, 2016 - 08:40
We just spent Karly's 2nd birthday at the NIH in Bethesda, MD. She received Tyler's life-saving bone marrow 2 years ago on July 25, 2014. That time was full of the unknown, yet we were at peace following God's plan to proceed with this transplant. Little did we know all the benefits that would come of it. There have been many DOCK8 Haplo-transplants since then...mostly with a fantastic outcome. We remember those that didn't make it through their transplant. It saddens us. We start saying, "if...
Wednesday, May 25, 2016 - 12:55
Hi All,
I have been remiss in keeping you all updated. Since February, Karly has been fighting some kind of infection in or around her eye. We first thought it was caused by her sinus', but after treatment of that, we saw no improvement. Then she tried an eye drop antibiotic...not much improvement. Then a different eye drop antibiotic...again no improvement. She was bleeding out the corners of her right eye, and it was worsening. Finally, we were allowed to see her eye surgeon who had...
Tuesday, February 2, 2016 - 19:31
This is from Kelsey's Memorial page on Be The Match.
Kelsey lived life exuberantly until her death on February 2, 2011. She lived with an undiagnosed primary immunodeficiency disease until 2009 when it was finally diagnosed at the National Institutes of Health as Dock8 Immunodeficiency Syndrome. Having spent 10 years in a research protocol at the National Institutes of Allergy and Infectious Disease, she gave more blood, skin, and cells than anyone with this disease leading to its...
Tuesday, February 2, 2016 - 11:10
Praising Jesus that her transplant has gone so well! She is still thriving! Her BP continues to stay steady. We have seen her Indiana nephrologist, interventional radiologist, and cardiologist. We have made some changes and as usual it is the balance between heart and kidney happiness. Karly makes daily changes depending on what her body is doing. We leave for the next round of NIH visits on February 24. We haven't received a schedule, but it should be more of the usual. We look forward to...
Tuesday, November 17, 2015 - 17:53
Karly's Bilateral Renal Angioplasty went so much better this time in terms of pain. The pain is what she was dreading the most. The doctor came in, and we shared how much pain she was in during the procedure in March 2014. He said he couldn't do much about it, because they needed her alert to take deep breaths at certain times... but he would try. I guess that meant she would be pretty alert. Well, Praise Jesus, all was accomplished, alert enough to take deep breaths and pain free enough to be...
Tuesday, November 10, 2015 - 08:50
Karly is doing phenomenal. She is serving our Lord and Savior everyday. She is our beloved daughter. She's an amazing sister. She is Zach's girlfriend.  She is taking 2 classes. She is going to meetings that involve Ball State Cru leadership. She's helping pioneer Cru at Ivy Tech. She is leading a new Small Group at Ivy Tech and is in one at BSU. She is a survivor. She's a miracle. She is thriving! Praise the Almighty Father for the work He he has done and is doing in her life!

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Tuesday, September 8, 2015 - 16:17
The weeklong appointments proved to be informing and interesting. It was the usual run-through of CT's, MRI's, dermatology, dental, eye, dexa scan, allergy, nephrology, pulmonary, echo, stress test, bone marrow biopsy, gynecology, cortisol stem test, fluids, ENT, 1 yr. vaccines, IVIG,  and consults with doctors. We had a few surprises; she has some chronic GVHD in two places that we were unaware of. Fortunately, it is asymptomatic most of the time. It can flare as it did in her...
Wednesday, July 22, 2015 - 19:41
As we approach July 25, I am feeling extremely emotional. What a journey it has been. What a heap of learning we've done. Since the diagnosis of DOCK8 in March of 2009, no one could have guessed where we would be these 6 years later. Many DOCK8 children have died. Some died without ever getting a diagnosis. HOWEVER, many more have lived because of the diagnosis. NIH worked relentlessly to discover what was happening to our kids. With the first eleven kids grouped together and 4 of those dying...

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