Madeleine Amelia DePersis Zarlengo has not only a big name, but a big burden to carry. She has Pitt Hopkins Syndrome. Despite her diagnosis, she is so light, effortless in her ability to bring joy to all and a provider of endless sunshine. It seemed only fitting that in honor of her second birthday, August 3, she have a “Sunshine” themed party to raise awareness and funds for the Pitt Hopkins Research Foundation.
Threat of rain didn’t scare away guests who were all rewarded with perfect weather just as the party began. One hundred of her closest friends and relatives joined together in her backyard to celebrate all of her accomplishments over the past two years. Madeleine had a lot to celebrate! She had just become independently mobile as an official “crawler.” Standing was rapidly becoming a favorite pass time and attending school was a whole new adventure just starting.
Guests enjoyed the afternoon sipping on “Liquid Sunshine” (a pineapple and tequila cocktail) and sparkling pink lemonade. No one went hungry either with plenty of Madeleine’s Dad’s famous smoked pulled pork, Madeleine’s Grandmother’s inspired Mac ‘n Cheese and Madeleine’s favorite smokey bacon baked beans. Dessert satisfied everyone’s sweet tooth with many options including pink-chocolate dipped rice crispy treat pops, Madeleine’s Mom’s signature pineapple upside-down mini cupcakes and a two-tier strawberry lemonade birthday cake.
Never a dull moment, there was lots to do besides just eat! Thomas and Paker, Maddie’s friends and brothers to Henry, another little boy with Pitt Hopkins Syndrome, performed street magic and created balloon animals. Friends enjoyed splashing around in the water table and cooling down in the wading pool. The biggest hit, and possibly the most simple, were the endless supply of bubbles from the bubble machine that filled the yard with delight.
In lieu of gifts, Madeleine’s Mom and Dad requested donations be made to the Pitt Hopkins Research Foundation. There could be no better gift than a contribution to the scientific research seeking treatments and a cure for the rare syndrome that affects Maddie every minute of every day. Almost $5000 was collected in Madeleine’s honor that afternoon.
To say thanks, every child received a personalized gift bag with sunglasses and other goodies and every guest was sent home with sunshine shortbread cookies. But the smile on Madeleine’s face when she smashed her cake and then splashed in the pool was all anyone at that party needed to know how grateful she was for their support.
Madeline’s family has gone onto raise another 3K for Pitt Hopkins Awareness Day on September 18th, 2016, in honor of their sweet sunshine.
