With a gleaming smile, Lilly, 5, climbed, slid down slides and excitedly ran around the new playset which fit perfectly in her backyard. Her screeches of joy made it easy for everyone around to know that her wish had just come true.
“It doesn't always work for us to make a trip to the park whenever she wants to go play,” said Erin, Lilly’s mom. “Now, she has a safe place in her own backyard that she can go play on whenever she wants!”
It was around Lilly’s third birthday when Erin, and Lilly’s dad, Nathan, noticed a small lump on the side of her face. What was initially believed to be a simple case of cellulitis, eventually turned into something far more serious. After a few tedious exams, Lilly was diagnosed with a rare blood disorder.
“It was terrible and horrifying for us as a family, but it's also hard not to feel positive about the experience,” Erin said. “So many families with rare diseases have very lengthy diagnosis pathways, and devastating side effects as a result. Thankfully, we live in a city with top-notch facilities and personnel, so there was never the question of ‘what do we do?’”
Although Lilly’s family had an answer, their daily routine still flipped upside down. Lilly had to learn how to deal with her new “normal” which involved more than a year of chemotherapy treatments, testing out different antibiotics and many trips to the ER.
“Every time she would get accustomed to something she didn't like at first, she would experience severe side effects and it would have to be changed,” Erin explained. “That type of constant change and lack of control can be hard on a preschooler.”
Aside from all the treatments, Lilly’s family also found it hard to cope with some of the more emotional aspects of her diagnosis. Because Lilly’s disorder affects her white blood cells, she typically does not have visible symptoms. The concealed nature of the disease often made it hard for others to understand Lilly’s medical struggle.
“Lilly's illness is invisible in a lot of ways, and isn't as severe or obvious as many other kids, so her need to be acknowledged and validated wasn't always at the top of anyone's list,” Erin said. “Make-A-Wish® acknowledged the hardships Lilly was going through and made her feel both special and seen.”
It was very special for Lilly and her family to receive her wish to have a new playset. It has already proved able to bring a lot of joy to Lilly, something which had been lacking from her life for far too long.
“It was really beautiful to have someone reach out and give her something she really wanted that can brighten her day, every day,” Erin explained.
After Lilly's wish was granted and Lilly's dad experienced the power of a wish firsthand, Nathan decided to fundraise for Make-A-Wish Michigan by signing up to hike in the inaugural Trailblaze Challenge.
"I saw the Trailblaze Challenge announcement in a Make-A-Wish [newsletter] that we received, and there was no hesitation," Nathan explained. "Lilly was receiving her wish this year, I love the outdoors and hiking, I had been considering doing another fundraiser this year, it was a natural fit."
Nathan will join other hikers for a 21-mile trek along the Manistee River Trail/North Country Trail on Saturday, Sept. 9.
To learn more about the Trailblaze Challenge and how you can support hikers like Nathan, click here.