A few weeks ago, I got an email from Kate Daniels, a nurse at CHOP whose niece and goddaughter, Emma Daniels died from Krabbe disease (or globoid cell leukodystrophy) at age 2 in 2012.
At the May 15th gala celebrating the Leukodystrophy Center of Excellence's creation, the Daniels family received the first-ever Kelly Tough Inspiration Award for their efforts to bring newborn screening to New Jersey. Since 2015, "Emma's Law" requires that the more than 100,000 babies born in New Jersey annually be tested for five lysosomal storage diseases (LSDs) ( including globoid cell leukodystrophy (or Krabbe), Pompe, Gaucher, Niemann-Pick, and Fabry). Identifying children at birth is a crucial tool in combating diseases like leukodystrophy since treatment must start before the damage to the brain and central nervous system become irreversible.
Kate, and her mom Cheryl, were keenly aware of the anguish hearing the word leukodystrophy brings to families.And the Daniels family wanted to help the 160 patients who come to CHOP's Leukodystrophy Center, especially families referred to the clinic through newborn screening.
Cheryl Daniels is a quilter, and so using her talents to connect with newly diagnosed families became a perfect project. Kate Daniels delivered four beautiful quilts for the children of the LCE made by her mother and several close friends in the "Sew Help Me Quilters" group.
Sarah Stoney, the LCE social worker, knows the "beautiful and thoughtful donation" will be cherished by families because "the quilts will warm the hearts of our patients with the love they were made with.”
For Cheryl, the quilts are a way to support families: "I will never forget when I first heard the word leukodystrophy. Naively, I had no idea what it was [how] it would impact me and my entire family." With the regular gift of quilts, Cheryl offers a "small bit of comfort to families in need," and "every hand sewn quilt is a symbol of our love for Emma and our genuine concern for their own precious babies."
Cheryl remains a dedicated advocate for newborn screening and says "she will not rest until every state adopts some version of Emma's Law." Emma's story and expanded newborn screening played a crucial role in CHOP's multi-million dollar commitment to the first-of-its-kind Leukodystrophy Center of Excellence. And as the grandparent of a child with leukodystrophy, Cheryl understands the impact the LCE will have for research, care and support to families. "The Center is doing extraordinary things, and I am so proud of Emma and what her life will mean...I look forward to the day when, working together, we eradicate leukodystrophy, once and for all."