We are the Wisniewski family from Virginia. Our daughter Libi is almost a year old and was diagnosed with Fanconi anemia (FA) only 30 days after she was born.
As you can imagine, it's been a very intense last several months.
But earlier this summer, we got to go to the FA Family Retreat at Camp Sunshine. And this experience has given us more hope than we thought we'd find.
Have you ever stepped out of a cold, dimly lit building into a mild, humid-free summer day? That was Camp Sunshine. Warm. Bright. Hopeful. Fully seen. Fully known. Accepted.
About 25-30 other FA families greeted us in the lakeside wooded retreat of Casco, Maine. The time we spent together was unforgettable, and could comprise multiple pages. But to summarize, we had 3 major takeaways:
We learned more about FA from nationally renowned doctors and researchers. They didn't sugar-coat their findings about this disease, but they did offer a consistent message of hope. More than a decade ago, the life expectancy for someone with FA was around 18 years old. About 5 years ago, that number increased to the late 20s. Today, many adults are living into their 40s and beyond. There are now more adults with FA than children! As advancements in science and medicine occur, this may push life expectancy even further. I had the pleasure of meeting one of the oldest known individuals in the FA community who is 45 years old. The emotional impact this had on me was indescribable.
We met people from different ages, incomes, racial backgrounds, countries, marital statuses, and gender identities. What is so profound about this group of people is how tightly bonded we all are. We are united against this terrible disorder. We struggle together. We are for each other. We rejoice with those who rejoice, and weep with those who weep. We just get each other.
Libi's turbulent birth story and early diagnosis are a rarity, even among a rare crowd like this one. There is something about her story that is so unique, so meaningful that it couldn't have happened by chance. Some families didn't receive an FA diagnosis until their children were in their teens. For us, this diagnosis came so early that it feels as if we're ahead of the curve. Early detection is everything in the medical world, and it couldn't get much earlier than this. For that, we are grateful.
Our week at Camp culminated in a wish boat release by each FA child. The weather was not cooperating, but we proceeded with the activity nonetheless. A candle was placed on each boat which was decorated by the child. As the boats were sent off, the candle represented a wish from each child and family amidst the uncertainty that not all of us will make it to next year. Each day represents a wish for life, for love, and for joy in the sorrow.
Life is precious. It's short. This is especially true for the FA community. Krissie and I feel we've been given new eyes that see each day as an immeasurable gift.
Thank you for reading, and thank you so, so much for supporting families like ours. We are at the beginning of this journey and your support gives us something to hold on to as we move forward.