On January 31, 2014, Declan was born. And on that day, for four short years, we celebrated and imagined his future. Will he play football, soccer, or baseball? He has always loved sports and we talked about cheering him on at his games. What will his interests be as he grows older? Will he enjoy science as much as we do? Where will he go to college? What kind of man will he be? But on April 26, 2018, we received the diagnosis that Declan has Sanfilippo Syndrome, a terminal disease that is often likened to 'childhood Alzheimer's disease.'
This year, his fifth year, is completely different. Now the celebration is bittersweet. It is his birthday, a time to celebrate. But now we wonder how many more we will get. Soon Sanfilippo, the disease that has been progressing since his birth, will make itself very apparent. He will start to regress and will lose the ability to walk and talk. His future will be a wheelchair and a feeding tube, dementia, and pain. He will die, most likely in his late teens.
Today, Declan has some speech difficulties, trouble sleeping, and headaches, but he is a very happy, energetic boy. He needs help NOW! We want him to have a quality life, full of many more birthdays.
We are fighting for Declan and all children affected by Sanfilippo. We are doing this birthday campaign to help fund critical research for treatment options and a possible CURE. There are scientists and promising research opportunities out there that show so much promise. We are hoping to raise $10,555 in just 7 days - from now until midnight on Declan's birthday, January 31st. His birthday wish is LIFE.
Every dollar donated will go to the Cure Sanfilippo Foundation, a non-profit, that funds this needed, urgent research. Please help us reach our goal and give Declan and all other children with Sanfilippo the gift of life.
For more information on Declan, please visit https://www.facebook.com/DoItForDeclan/
For more information on the Cure Sanfilippo Foundation, please visit https://curesff.org/