Lily and Kristin

Never give up

by Erika Muscat

Photos courtesy Kristin Cuttress

Lily was just seven years old when she started to get very sick. For three months, she suffered with migraines, stomach aches, urinary tract infections, random vomiting and more. Eventually, she was so sick that she was barely able to function. Further tests determined that Lily’s kidneys weren’t functioning properly.

The doctors prescribed Lily with a six-week course of steroids. Unfortunately, there was no change. Next a biopsy was performed and Lily was then diagnosed with a form of kidney disease called Focal segmental glomerulosclerosis (FSGS), which is rare in children.

Lily spent 120 days in the hospital, navigating her way back to health in her kidney disease journey. She has faced many challenges that are not only unique to her, but to any child with a chronic illness. For example, Lily had a catheter inserted in her chest for hemodialysis access. She once had a nasogastric (NG) tube, and now, post-transplant, still has a gastrostomy (G) tube. She has struggled with moon face due to the prednisone, and with weight gain and loss, due to the fluid fluctuations inherent to her disease.

“At the age of seven, Lily asked me what she could do to lose weight,” explained Kristin, Lily’s mom. Kristin sat down with her and had to explain there was nothing she could do, and that it was a part of her disease. Luckily, Lily seemed to understand. Kristin has, on more than one occasion, spoken to Lily’s class to explain Lily’s condition and talk about her hemo line.

Now, in Grade 6, Lily is post-transplant, and she controls what she can. She chooses her clothes, does her makeup and dyes her hair. She doesn’t let kidney disease define who she is. Lily has been extremely fortunate to have a core group of friends who have fully supported her along the way. In fact, a group of 25 of them come out every year to support Lily in the Kidney Walk.

Lily was also fortunate enough to attend Camp Kivita this summer—a camp for kids who live with organ transplants and organ failure. “She loved camp,” said Kristin. Even though Lily could only attend camp for three days because she got sick, she went back at the end of the week to say goodbye to her new camp friends.

Kristin now helps lead the Kidney Connect Peer Support group for ‘Paediatric Caregivers.’ She says that the positive outcomes of Lily’s kidney disease are that Lily is very independent, and more importantly, the entire family feels the love and support from their close friends. They’re grateful for the new friendships they’ve made through The Kidney Foundation. Her message to other families going through a similar journey? “Reach out for help. Don’t give up. It can take time to find the right help, but it’s worth it in the end.” 