An open letter to all of you who love my very sick grandson
In April of this year, our family started a journey we never dreamed we would endure. My grandson, Jase, started bruising very badly. The pattern of bruising was unusual and we knew something was wrong. Everyone was terrified Jase had Leukemia and in my sleepless nights of surfing the internet I realized childhood leukemia has a high cure rate. But after months of hospitalizations and test, we got an answer that changed our lives forever. Jase has Dyskeratosis Congenita which is a rare genetic disorder caused by a mutation in one of his genes. The disorder is so rare that only 7000 people worldwide have been diagnosed. The absolute worse part of this news is that there is no cure.
Dyskeratosis Congenita can be mild and show up in mid to late life, it can show up in the teen years or in very severe cases it can show up in the first 2 years of life. It often shows up as bone marrow failure, pulmonary fibrosis, liver problems, and a host of other problems. For Jase, the first symptom was bone marrow failure at 2 years old. We don’t know what he will face in the future. There is no way to determine what other problems this disorder will cause.
So for now we are taking it one day at a time. Jase will have a Bone Marrow Transplant in the next month or so. After that we will take each day as it comes.
This journey has taught me more than I ever care to know about any genetic condition. It has taught me to treasure every day I have with my grandchildren. It has taught me that children are so much stronger than adults. But it has taught me so much more than even these very important things.
There are people in this world that love my grandson and have never physically been in his presence. Strangers have sent love and support. Strangers have donated to his youcaring.com fundraiser. If I could say anything to those people it would be, you will never know how much your love and support has touched our lives. In a time when nothing in our lives seem certain you have showed us that the one thing that is for certain is the fact that we won’t have to face any of this alone.
When Jase and his family move to Boston on November 1st, they will know they are not alone. TeamJase (facebook group) is what we call this huge family Jase has created. And all of you are a part of that.
So to my friends that have been here for years, and to the ones I have come to know through Jase, Thank You from the bottom of my heart for loving my grandson. If love could heal Jase he would have no need for a bone marrow transplant. But love does heal in many ways. It has helped to heal the devastation that we all felt in the beginning. Love has given us the strength to go to the ends of the earth to save our little Jase. Your small acts of kindness have made a huge difference in our lives. We hope TeamJase continues to grow so we can meet even more wonderful people in this world.
We truly love and appreciate you all!
