Watching 10-year-old Nash Overton race his bike around his yard or jump on the family trampoline, or look forward to his next hockey game, one would never guess that he has been in a life-long battle with kidney disease.
Turning 11 next month Nash was diagnosed with nephrotic syndrome when he was two years old.
Since then he has been on a roller coaster ride of tests, treatments, relapses and remissions as doctors work to keep his kidneys functioning.
“Treating NS is very hit or miss with a limited number of treatment options,” says Nash’s mom, Fallon. “You try treatments through the trial and error approach.”
In simple terms nephrotic syndrome is an autoimmune disorder in which the kidneys leak blood protein called albumin.
They have tried gluten free and dairy free diets, and homeopathic remedies but over the long-term rounds of the steroid Prednisone coupled with anti-rejection drugs, diuretics to reduce water retention and diet restrictions have been the mainline treatment to shock his kidneys into working properly again after a relapse.
In his young life so far, Nash has had more than 30 relapses requiring weeks and sometimes months of high dose Prednisone treatments.
In many cases children with nephrotic syndrome will outgrow the disorder in their teens. But this past year has been a difficult one for Nash and his family after learning that he does not have the type of nephrotic syndrome that children can outgrow.
Last fall after participating in the annual Kidney Walk in Boitanio Park, Nash began to get sick again. Prednisone treatments were no longer working to control the disease. A biopsy conducted in November showed scaring on the filters of his kidneys indicating that the disease was progressing into a more tenacious form called FSGS (Focal Segmental Glomerulosclerosis). FSGS could eventually lead to kidney failure, requiring a kidney transplant.
“Our hearts broke even harder than they have ever broken before,” Fallon said. “This was devastating to our entire family. Nash has had to deal with so much in his short life and we know the road is going to get so much harder.”
In December and again in March Nash and his family returned to Children’s Hospital in Vancouver where Nash received direct transfusions of the blood protein albumin and was started on an alternate treatment to the steroids in the form of a drug which is normally used in chemotherapy treatment for cancer.
The drug rituximab suppresses the immune system and stops the kidneys from leaking protein, but as an immune suppressant also puts Nash at greater risk for infection.
After the initial treatments in Vancouver Nash came home with a PICC (peripherally inserted central catheter) line in his arm so that he could receive albumin and Lasix diuretic infusions two to three times a week at hospital in Williams Lake. In-between hospital treatments his parents cleaned the PICC line daily and injected another drug to prevent blood clots.
“We had a rough five months struggling to find the right balance between medications, medication side effects, disease side effects, disease progression, diet restrictions, fluid effects, albumin infusion, Lasix infusions, high blood pressure, critically high potassium, low blood albumin, high phosphorus and low phosphorus, low hemoglobin and erythropoietin injections,” Fallon said.
Through all the poking and prodding, exhaustion, and bloating (he can gain eight pounds of water weight in a very short time during a relapse), his family is always amazed at how he maintains such a happy, loving and positive attitude through his relapses.
“I just probably got used to it,” Nash said. “But I think I just know that it is helping me to get better so I try to stay strong.”
“Stay strong and keep positive,” has become his motto and message to other children struggling with kidney disease.
Nash’s kidneys finally began functioning properly again toward the end of May allowing him to once again enjoy activities with his family and friends such as camping, water sports, riding his bike, and jumping on their trampoline.
“We are calling it our summer health holiday,” Fallon said.
Now in Grade 6 at Chilcotin Road Elementary School, Nash is happy to be returning to school and once again playing hockey that he had to give up last winter during his relapse.
“I have been playing hockey for six years and play every position,” Nash says. “I really started liking hockey two years ago.”
He is also once again looking forward to participating in the Williams Lake Kidney Walk taking place Sunday, Sept. 24 starting at 10 a.m. in Boitanio Park. The event is held to raise awareness about kidney disease and raise funds for The Kidney Foundation of Canada B.C. Branch which helps to fund research and raise awareness about the organ donor program.
For the past few years Team Nash, with help from family, friends and the community has been the top fundraisers for the foundation in B.C.
With all of the uncertainty in Nash’s life, Fallon said that fundraising has been one of the positive things they can do to help.
They started out in 2013 by holding car washes at Heartland Toyota where Nash’s dad, Gerald, is the general manager.
“We were blown away by how much people donated that first year,” Fallon said.
They raised $2,200 in 2013 then took a year off and began fundraising again in 2014 raising a total of $14,000.
In 2016 donations on behalf of Team Nash climbed to $17,000.
This year so far they have raised $11,500 for the foundation with various activities such as hosting the barbecue for the Vintage Car Club of Canada when they made a stop at the Tourism Discovery Centre this spring on their tour of the region celebrating Canada’s 150th anniversary.
Pioneer Log Homes of B.C. founder Bryan Reid Sr. with the help of Nash’s grandfather Gerald Overton Sr. raffled a log bench raising $5,000 for the foundation during the Vancouver International Auto Show where the company’s Cedar Rocket log car was being shown.
Nash and his sisters Reese, 9, and Halle, 5, help out at various fundraisers such as the Blooming on Canvas fundraiser held at Heartland Toyota earlier this year that was attended by 40 people.
Nash was among the artists showing his creative side in painting a collection of vintage suitcases.
The Team Nash fundraising continues on the The Kidney Foundation of Canada B.C. Branch website where the team has been the leading fundraiser in the province for the foundation three years in a row.
“We are continually blown away by the love and support we receive from our family, our friends and from this amazing community we live in,” Fallon said.
