For the Love of Loie

In almost every photograph during the first years of her life, Loie Hammond is smiling.

Matt Hammond's favorite picture of his daughter is a beaming Loie seated on his lap. In the photo, it is a bright sunny day at the shore.

Until the age of two, Loie seemed just fine, that is one of the cruelties of leukodystrophy, the kids appear perfectly healthy. Loie loved books (especially Trace Traylor's Dogtown Diner) and eating ice cream sundaes and anything that had to do with dogs. But then, Matt and his wife Lauren noticed that their youngest child seemed to get weaker. As is often the case with leukodystrophy, the doctors misdiagnosed Loie with a form of cerebral palsy.

Just as the Hammonds were coming to terms with what it would mean to care for a special needs child, Loie grew more ill. She was now losing milestones and had difficulty standing, sitting and making her body do what she wanted it to do. Matt and Lauren knew cerebral palsy would not be doing this to their daughter. Additional testing revealed a new diagnosis, and on December 24, 2012 Matt and Lauren heard the words metachromatic leukodystrophy for the first time.

Matt and Lauren wanted to make sure their decisions were the best ones for Loie and after consulting specialists at CHOP, Pittsburgh, and Nemours, they began to work with a palliative care team based out of Nemours. Loie had gone from being a special needs child to a terminally ill one in a matter of months. The Hammonds were clear-eyed about what MLD meant, and they focussed on giving Loie the most wonderful life in the time they had together. They worked very hard to be as honest as they could with their older son, 5 year old Owen, explaining to him that Loie would not be getting better.

When the Hammonds got the chance to work with Make A Wish several months after Loie's diagnosis, the family chose to build a garden with bird feeders, wind chimes, and even a small fountain. Lauren and Matt designed the garden together, and Matt, an engineer who had built multi-million construction projects for Wawa and Goodman Properties, would never again take on a project that would matter more. The Hammonds could see Loie's illness would make travelling difficult, so they constructed a beautiful world in their home.

Matt and Lauren loved being outdoors and Loie's garden became a magical place. The unbearable became bearable with the garden for Lauren, and Loie was always happier outside,

Loie's weakened immune system meant a cold or a stomach virus would result in an admission to the ICU . The doctors at Nemours put Loie through so many tests to understand why she was losing weight and could not tolerate her feeds. They had tried different diets and even making up special "green goo" food for the g-tube. Lauren was home full-time with Loie, and when Matt got home from his job, he would care for Loie as well. Six year old Owen became a remarkable caregiver as well, and he took great pleasure in reading Loie's favorite stories to her.

Matt and Lauren were providing round-the-clock care, medications from 8 am to 11 pm. "The toughest part," Matt told a reporter for a local newspaper, "is that every day is different." The best part of the day came when they could make Loie comfortable and get her to respond to their voices. Neither Matt or Lauren ever wanted to put her down, they would spend hours sitting with her. As the disease progressed the most important thing anyone could do for Loie was be with her and cradle her in their arms in the garden.

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So this year at the Cupcake Challenge, so many people asked me about the little boy named Owen who was so very comfortable around the children in the specially adapted strollers and could make them smile and coo so effortlessly. Then other people wanted to know who the charming man named Matt who was helping park the cars of the leukodystrophy families and getting strollers and equipment into the elevators. Finally, I lost track of all the people who asked me about the striking young woman who was holding Cal for over an hour.

Cal's nurses and aides never allow people to touch or hold Cal, but there was something about the woman who introduced herself as Lauren that made them know Cal would be safe with her.

And watching Lauren with Cal was just like seeing the photos of Lauren holding Loie in her beautiful garden .Being with Cal made Lauren feel better. Looking at Lauren with Cal, I was astounded at how much I could sense Loie was right there with us. I don't mean like a ghost or some spirit you could contact with a psychic. The signal of Loie's memory grew stronger around Cal, and Lauren's love and longing for her daughter actually had a physical form you could touch and hold on to. In that moment, I could see how Loie had taught her mother how to love in the most perfect sort of way and see the otherworldly beauty in these children.

And now that Lauren had returned to school to get a degree in occupational therapy, Lauren would be able to share this immense love with other children and families to honor Loie. Lauren has become the most extraordinary woman and she will do so many amazing things because of Loie.

When I see the Hammonds, I know it is possible to build great things out of grief and love.

The world is a much better place because of Loie and the Hammond family's ability to share all the things Loie taught them with the rest of us.

You see, Loie comes back to life through the remarkable things they do for other people. And, maybe most importantly, the Hammonds have taught me that it is only possible to save yourself from this terrible grief is by helping as many people as possible.

The Hammond family has raised $110,000 for the Leukodystrophy Center at the Children's Hospital of Philadelphia and $50,000 of the $550,000 donated after this year's Black Tie Tailgate. On January 27th, 2016, the second anniversary of Loie's death, doctors at the Children's Hospital of Philadelphia created the Loie Hammond Memorial Lectureship. On May 15th, 2015, Matt Hammond was recognized with a Kelly Tough Inspiration Award for his work on behalf of children with leukodystrophy.

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