“400 in the world… and I have TWO. That is why I fundraise.”
–by: Tiffany Patten
For years I knew something was “wrong” with my twins, Seth and Carter, but no doctor could tell me what it was. I was determined to find an answer. What mother could be satisfied with a label of “undiagnosed”? I certainly wasn’t. I knew I couldn’t possibly be alone in my struggle.
The answer of Pitt Hopkins Syndrome finally came a month before the boys turned 4, but I was faced with even more questions. What is Pitt Hopkins Syndrome anyways- nobody I had ever met had even heard of it?! What does their future hold? Will they walk? Will they talk? Will they be what our culture deems “productive members of society”?
Three years ago there were only 200 known cases, and today there are still only about 400 diagnosed cases in the world. 400 in the world… and I have TWO. That is why I fundraise. To advocate for my children. To raise awareness. To find answers. To find a cure. If I don’t speak up for Seth and Carter, who will?
To know the boys- or any child with Pitt Hopkins is to know LOVE. Pure, simple, and unconditional love. These kids are HAPPY. Happiness is defined as “a mental or emotional state of well being characterized by positive or pleasant emotions ranging from contentment to intense joy”. I can think of no other word to better describe my children. They are simply happy.
They have changed who I am for the better and truly enrich the lives of all those who they come in contact with. The joy they find in the little things reminds me to look for the beauty in the world around me. They have taught me patience and humility. They have helped me find inner peace. They remind me to laugh.
They are love embodied in smiley faced little boys. And while most of our days are filled with giggles and squeals of delight, not every day is. Some days they cry and I don’t know why. Some days I see them watch other kids run and play and it breaks my heart that they can’t join in the fun. Some days they look into my eyes and try so hard to tell me what is on their mind, but they can’t form the words. Some days nothing makes them happy….and there is nothing I can do.
That is one of the worst feelings a mother can ever experience- not being able to “fix” your child. So, I fundraise in the hopes of making the future better for Seth and Carter and all the other kids with Pitt Hopkins Syndrome.
–Tiffany Patten, mom to Seth and Carter
