It’s hard to believe it’s been 10 years since I learned of Hunter Syndrome, the incurable disease.
We came to know and care about many children during these 10 years. Children who like Jack fighting each day and children who have entered heavens gate way to early in my mind.
As you journey with these children and their families – near or far– I know the worst is yet to come. I know the pain I felt when Jack was diagnosed is only a shadow of the pain I will feel when he is gone. But as a witness to a deep unbearable pain I see that ones grief, and ones hope is so worth it; your child was worth it. All of them would do it over and over again. For the meaning and purpose your child brought into yours and other lives will ultimately be worth all the pain.
And so 10 years later I continue to live with hope. Jack is living. He is the hope. Diagnosis day is forever engrained in my heart and head however the pain is far removed. As a witness I allow my heart to prepare for an unfathomable pain and I recognize each moment is worth it!