It is late tonight and I have been thinking about writing this post ever since I heard the news…
It was a story of hope for a precious little boy living in a group home in Washington state, a little boy name Seth. Seth had never known a mother’s love for he had spent his entire life in a group home. He was forced to face his EB alone, never having a mommy to comfort him and hold him. Seth suffered from a severe form of EB and unfortunately he did not receive the consistent care that someone with EB needs. This lack of care left him confined to a wheelchair in excruciating pain alone and scared. No one to tell him it would be okay, no one to wipe his tears.
This was all to change for Seth, for there was a loving family waiting for him. The Knuth’s already knew the challenges that EB presented for they had already adopted an amazing little boy Charlie who has EB. They knew of all of the fears and anxiety that Seth faced daily and they knew the care and love that he so desperately needed. Without ever meeting him, they fell in love and knew that they had to “Bring Seth Home”. It did not take long after Trish’s announcement of the pending adoption that a group of amazing volunteers began working endless hours to come together and help the Knuth’s; to help Seth. People came together to help save this precious little angel, so that he may know an incredible love.
Trisha was finally able to fly out to meet her son in February. She spent countless hours playing, reading, just talking to Seth and loving him like only a mommy could. I can only imagine how powerful this was for both of them. For the first time Seth felt safe; he felt loved. And he was, the thought of leaving him was unbearable to Trish, he needed her. She reassured him that she would be back, giving him her EB butterfly necklace to keep safe until she returned.
Unfortunately Seth became very ill after she left and as soon as she returned home, she found herself back on a plane to Washington. When she arrived, Seth was incredibly sick and weak. Trish stayed by his side and told him of all of the wonderful people building his bedroom and how all of these people who had never met him loved him so dearly; all of the lives he had already touched including the family whom he had not met. His poor little body had fought so hard for his entire six years and it was just too tired. Sadly, with his mommy by his side, her head on his, he faded away.
Even though Seth had spent years suffering alone, he was given an amazing gift in his last days. The gift of a mother’s love; the joy of a family he had not yet met and the comfort of knowing that he would never have to be alone again.
We will never know why Seth’s journey had to end when it did, but his story, his legacy is far from over. Seth will live on in the many hearts that he touched. He will live on in what has become known as “Seth’s Village” for somewhere there is a child whose life will be saved because of it; because of Seth.
Seth, although we did not get to meet, you will always be a very special Little Light.