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The "Meatball Lady" and Cal: Our friends at Carlino's

Laura Carlino with Cal on July 15th for the Carlino's Cupcake Celebration fundraiser.

Every Sunday after church, I had a routine with the children from the time before Cal was born and then right up until she got sick. After services, I would take them to Carlino's. Carlino's was the only place the kids would go shopping with me because they would grow impatient in other stores. Carlino's is so special because it was like the markets I remember from my childhood in Cambridge, the places my late father would love to go for a treat in the city. With its beautiful bakery case and the bread and the cheeses, there is something for everyone.

Before Camille became a vegan, I would get her turkey and American cheese for her sandwiches, PJ would lobby me for a lemon bar, and my Cal, the baby, was the star of our visits to Carlino's. If the owner Laura Carlino was in the store, Laura would run from behind the counter to cuddle and play with Cal,. Laura would give Cal cookies and freshly sliced bread. As soon as Cal got teeth, Cal's favorite meal were the giant turkey meatballs. Cal and I called Laura the "Meatball Lady" because we would get our weekly supply of meatballs on those Sunday afternoons.

After Cal got sick, trips to Carlino's grew more infrequent. One day Laura spotted me in the store and she could tell something was very wrong. Cal was not with me, and it is also quite possible I had showed up at the market in the clothes I had slept in the previous night. I remember telling Laura about Cal's diagnosis and that Cal was dying and there was nothing anyone could do. I remember asking Laura, "How can Cal be sick, she can stuff 2 meatballs in her mouth at the same time?" And in the middle of the store, Laura embraced me as we both we both cried so much that people had to stop and stare.

A year later, I told Laura Carlino about the new therapy in Italy for Cal's disease and explained we would be starting a foundation. Laura's response was. "Whatever you need," Laura repeated that promise. "Whatever you need." After Laura met Dr. Alessandra Biffi at our the Cupcake Tea in April, the Carlinos were more determined than ever to help us bring gene therapy to America. The fact that Dr. Biffi had left Milan to work at Boston Children's represented a huge opportunity and the Carlino family knew that a cure for Cal's disease was in striking distance..

In those first years, when no one knew about Cal and our work, long before there was a Leukodystrophy Center at CHOP, the Carlino family donated cupcakes, raffle baskets, and sandwich platters. It was Laura's idea to have Jill Santoro, a longtime Carlino's employee, become a judge for the kids baking competition.

So yesterday, at the same Carlino's store Cal had gone nearly every Sunday since before she was born, Cal and Laura were reunited.

Laura had not seen Cal since she got sick and it was like two old friends had found each other again. I had worried what it would be like for Laura to see Cal in her stroller and so fragile with nurse and tubes. I need not have worried, Laura got down right next to her and kissed and hugged her. Cal laughed and smiled - the way she does for her grandmother - Cal knows recognizes the people who love her.

At the beautiful Carlino's market, the family hosted a hugely successful fundraiser for Cal. They premiered a signature cupcake in honor of Cal that will be on sale this summer with all the proceeds going to our Foundation. They sold out of the cupcake four times in two hours, I lost track of hundreds of cupcakes that were sold. There were prizes and face painting and a kids cupcake decorating contest. I am guessing they raised a substantial sum of money. And the money is wonderful, their gift will go to the Challenge grant research fund and cover the costs of a new book explaining leukodystrophy in terms children can understand.

But, the thing I will never forget is having Cal see Laura again, and realizing how much those Sundays at Carlino's still mean to Cal and me and Laura.

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