Our son Blake is 14 years old and eight years post bone marrow transplant. While we celebrate milestones, it’s important to remember that the transplant did not cure his Fanconi anemia. It gave him something incredibly valuable, more time, but FA is still part of his life.
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Daniel Kold
Member
Daniel lives with his wife and son in a small town close to Copenhagen, Denmark. He is 45-years-old and works as a pedagogical assistant at a nursery. Daniel received a bone marrow transplant in 1985 and had one oral cancer in 2014, the same year he first attended his first FA Adult Meeting. Daniel strives to be a positive role model and to show younger people with FA and their parents that there are plenty of reasons to plan for a better future for yourself or your child. FA is serious, but Daniel sees the power of using humor to make life a little bit easier. A self-proclaimed “big child”, gaming is a big passion of his. He worked in the gaming industry for years and also used it raise funds though livestreaming online games. He launched a podcast called “Life, Death, and Happiness” that featured the stories of those living with rare diseases (many guests have FA). Next on his creative endeavors is releasing a Danish rap album in May 2021. Daniel is committed to living life to the fullest and serving as an inspiration on how to live with FA in a positive way.
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When I was 20 weeks pregnant, my doctor recommended an amniocentesis so we could find out what was causing concerns during my pregnancy. They took amniotic fluid for testing, and that's when my husband and I learned our daughter had a rare genetic disorder called Fanconi anemia (FA). We found out that we were both carriers, something we had never known.
The Family Retreat offers families a break from appointments, treatment decisions and everyday responsibilities. Children can try new activities and grow in confidence while caregivers learn, share practical support and connect with one another. The relationships formed at camp often continue long after everyone goes home.