It is with mixed emotion that I write this letter but after much soul searching and thought we have decided to cancel The 2nd Annual Jack Carlson Memorial Golf Outing. Our dream was to establish The Jack Carlson Foundation for Congenital Heart Disease and we were in the process of doing so. We met with a lawyer who told us, “a foundation was a business and we had to fight and beg for money in order to compete for funding.” There are major organizations out there such as March of Dimes and Race for the Cure who have nationwide support and resources. All charities are worthy but we are not able to compete against those that can raise millions of dollars in one weekend. We are not comfortable having to constantly ask for money to fight CHD. We are only one family with a lot of passion, but few resources and support.
We fought for Jack’s life since we got the devastating diagnosis during the 20th week of pregnancy and we don’t have the energy to fight anymore. We have to find the energy to learn how to live with the pain of Jack’s death. We have to find the energy to live the life that Jack wants us to live. We will love, remember, cherish, honor and keep Jack’s purpose and memory alive every single day by providing his brothers with the life he never experienced, because CHD took that from him and it took Jack from us.
The second year of grief is much more difficult and we feel that if we establish a foundation in Jack’s name we are focusing on the congenital heart disease. At this point, we want to focus on the amazing little boy Jack was, and all the life lessons he taught to us and all those knew him. We hope to honor him by getting a tree and bench at the grave site etc.; the way we choose to honor our son will now be more personal to our family.
When Jack died we raised thousands of dollars for Save a Heart, and last year we raised over $11,000 for research that was directly earmarked in Jack’s name. We also collected and donate many books and toys that went to the clinic and 5 East (the heart ward for children at Mott). We are very proud of everything we have done and we are in no way turning our back on raising awareness or showing support for any charity that supports research for CHD. We will continue to collect and donate books and toys for the cardiology clinic and the pediatric cardiology floor at the new Mott because that is truly where Jack was loved and cared for, and we won’t ever stop repaying them or showing our appreciation. Jack loved bringing new toys to the clinic for the children to play with a couple weeks before he died. He loved making pictures for the staff and his roommates even as he was slowly dying and too weak to walk the halls. Jack would love our new plan of making other children smile.
We continue to urge all of you to support research for CHD and let me remind you of these facts; Congenital Heart Defects is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths. For every dollar provided by the national medical funding arm of the American government, the National Institute of Health (NIH), only one penny is provided for pediatric research, and only a portion of that penny goes to support research on heart defects, the most common birth defect (Children's Heart Foundation).
We don’t have a famous spokesperson and CHD needs someone who has power to come out fighting and until then, we will be a voice for CHD because we know firsthand what it does to an innocent child!
Thank you for listening and for understanding! Thank you for your past and future support. If you sent in a check for this year’s event, I will write you a refund check or return your original.
If there are any family and friends who still want to get together for a fun round of golf in Jack’s memory, please let Mort know. (golfmort@comcast.net)
