Archives by Day: March 13, 2019
Last year during the holidays, the Glenross community organized a spectacular light show. Over 130 homes participated in this synchronized display of holiday lights. According to NBC4i, “the display took more than 500 hours to set up and program.” While the free light display for community enjoyment would have been enough, the neighbors took it a step further. Hoping to support one of their own neighbors, the community accepted donations from visitors who came to see the light show. Together, they raised over $2,000!
So who is the neighbor who benefited from this amazing display of community generosity? Let us introduce you to the star of the show, Miss Lucy. To the outside observer, Lucy is your average three year old. She loves books, birthday cakes, and playing with her siblings. What you can’t see, is Lucy’s extremely rare mitochondrial disorder known as NUBPL.
According to the NUBPL Foundation’s website, “NUBPL is a progressive neurodegenerative disease that affects children. There are zero FDA approved treatments for this disease.” The severity and impact of NUBPL is different for each person. With no current cure or even treatment available, families of children like Lucy are left to raise money to fund more research.
We asked Lucy’s mom what advice she had for other parents. She shared three important tips: 1. Spread awareness; 2. Connect with other families; and 3. Don’t be afraid to share your story. “We have many people on this ride with us and we have a great community,” she said.
Lucy’s family was overwhelmed with gratitude for their neighbors’ generous idea to turn the Lights of Glenross into a fundraiser for NUBPL. To read the full Lights of Glenross story, click here. To follow Lucy’s journey, join her Facebook Group We Love Lucy – NUBPL Warrior.
This heartwarming story of community is just another example of how we are #BetterTogether.