Tuesday, February 2, 2016

5 years ago...Kelsey's Homegoing

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 discovery. Kelsey and her sister Karly were among the first 11 diagnosed with DOCK8 as stated in the New England Medical Journal September 23, 2009.
Her goal was to fight this disease in a rip-roaring manner in hopes of finding a cure for her younger sister, Karly, who has the same disease, and others fighting the same battle. With the knowledge at hand, she moved forward with a Double Cord Blood Stem Cell Transplant Fall 2010. It was the first transplant of its kind for DOCK8 in the world. She developed many complications which ultimately lead to her death. She fought valiantly and gave her body to the Institute to further research in this area. We never found a match for Karly, so the NIH continued to work on Karly's behalf to find an alternative for her and the other DOCK8 patients with no match. Karly became the first Haplo-Bone Marrow Transplant for DOCK8 on this side of the world on July 25, 2014. It was textbook if a textbook had already been written. Her case was writing the textbook. Other Haplo Transplants have occurred since then. We continue to educate people about the National Donor Marrow Program and the ease to join the registry. Our story is told more fully on www.kjkdancingthroughtherain.blogspot.com and www.dock8connection.org.

Kassidy's memories of Kelsey: She was very nice to me and very good at dancing. I remember her teaching me dance. She was outgoing. I wanted to be outgoing like she was. She was very friendly and could make friends with anybody. She wasn't afraid to express how she felt and what she believed in. Kassidy was 9 when Kelsey went home.

Konner's memories of Kelsey: I used to walk into room and find her reading her Bible. She came into my room at night and asked if I had any questions about what I was reading. She encouraged me to dance and learn the splits. One day we did the splits together. Whenever I'm at tap and not striving to do my best, I think about how she would do it and that pushes me on. When I'm not at home, I remember to be nice to people because Kelsey showed kindness to everyone. Remembering her life encourages me to live my life to the fullest. Konner was 11 when Kelsey went home. 

Karly's memories of Kelsey: When you sat by her, she had the tendency to pinch you with her toes, then tickle you. She helped me at the hospital to be brave. We would share a room, so when the phlebotomist came in she would stand behind him and make faces when it was my turn to take my mind off it. She displayed courage, bravery and how to overcome so then I would try to be like her. She seemed perfect to me. She found joy amidst everything. She had the loudest laugh in the room. She was dependable. She knew what to say and how to say it. Karly was 16 when Kelsey went home.

Trent's memories of Kelsey: Cupcakes! Haven't had one as good as hers since then. Trent was 18 when Kelsey went home.

Tyler's memories of Kelsey:She taught me to like rock and not be afraid of people with tatoos. I loved hanging out in her apartment when we were in college. P.O.D- Goodbye for Now. https://youtu.be/plGETDmXw5g
This song reminds me of Kels. Tyler was 20 when Kelsey went home.



Life with certainty is faith and trust in our God. We didn't choose to live life without her, so there is that sadness that will remain, but confidence....God knows exactly what is next. He knew then, and He knows now.
Love,
Mom






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