Bright and early on Nov. 7, the Lindeback family embarked on a nearly four-mile hike at Pinnacle Peak.
But this wasn’t any Sunday hike for mom Angela, dad Peter and 12-year-old son Nicholas.
This was Nicholas’ fifth year participating in Children’s Tumor Foundation’s annual Shine a Light NF Walk, which raises money for neurofibromatosis research, education, advocacy, and patient care.
Nicholas has neurofibromatosis type 2, or NF2, a rare genetic condition that causes noncancerous tumors to grow along the nerves. There is currently no cure.
“He has lost a lot of function in his left leg due to a tumor in his spine,” Angela said. “So, anything that involves walking is pretty challenging for him.”
And that’s all the more reason to celebrate Nicholas’ walk this month: He and his parents not only completed the hike but also raised $2,241 of their $2,500 fundraising goal and ranked No. 3 among the nine fundraising teams in Phoenix.
“It was hard,” Nicholas said of the walk.
Rebecca Taylor, the foundation’s senior development manager of the Shine a Light Walk Rebecca Taylor, said the organization was “quite pleased” with this year’s turnout.
“Pivoting to a virtual event has made the Shine a Light NF Walk even more accessible to families in and around Phoenix – and the entire country,” Taylor said. “This has also been a great success for grandparents and extended family members to now participate without having to travel.”
Nicholas’ grandparents in Jacksonville, Florida, were among those extended family members participating from afar.
They even organized a team for Nicholas, who used to participate in the walk in Seattle before moving to Phoenix three years ago.
“CTF really is leading the research neurofibromatosis. Currently there’s not a cure, but even since we started doing the walks, there are so many more different treatments and drugs that are in clinical trials that weren’t even available when Nicholas first got diagnosed,” Angela said. “CTF definitely funds and drives a lot of that research.”
Nicholas was diagnosed with NF2 in 2015 and since then he has had tumors in his brain throughout his central nervous system and on other parts of his body.
“He’s limited in his left leg. He has to wear a brace to walk. So, really any activity, like with hiking, running, it’s really tough for him to keep up, and it’s pretty exhausting,” Angela said.
Nicholas, who has had five surgeries, also lost a lot of hearing in his right ear, has limited hearing in his left ear, and recently got hearing aids.
He has surgery scheduled on Dec. 2 to get a port and will have to have biweekly infusions — “probably indefinitely,” Angela said — to help with the tumors.
“All in all, he just misses a lot of school,” Angela said. “Staying on top of school when you’re out doing radiation and having brain surgery can be pretty bad.”
But that hasn’t stopped Nicholas from pursuing the activities he loves most, like hiking and mountain biking and playing the drums, among many others.
“He’s always loved music, and that was probably one of the first things that was concerning to me – that he wouldn’t be able to do music anymore. But it hasn’t slowed him down. He’s pretty good at holding the drum beat and keeping the song going,” Angela said.
Peter, Nicholas, and his sister, Chloe, are all in a family band together called the Lindeback Cover Band.
Nicholas’ favorite song to play is “Heroes” by the Wallflowers.
They’ve been practicing very weekend amid the pandemic – save for the two weeks when the entire family contracted COVID-19 following Peter and Nicholas’ trip in June to Boston Children’s Hospital, where most of his medical treatment is done.
“He was due to have scans on his brain and spine as a follow-up from when he had the malignant brain tumor removed,” Angela explained.
About two days after landing back in Phoenix, Peter tested positive for COVID-19, followed by Angela and Chloe a couple days later.
“It’s so contagious,” Angela said. “My husband’s fairly certain that they caught it on the airplane because they were super careful.”
Now, Nicholas’ appointments are virtual, but the family continues to face challenges amid the pandemic.
“Everybody’s doing the best that they can with the virtual visits and ordering tests here and having sent over, but it definitely complicates things on our end,” Angela said.
“There’s pieces at different hospitals, so trying to make sure that all of the tests and scans get where they need to be can be frustrating,” she continued.
The Lindeback family also plans to continue to fundraise for CTF through the end of the year and hope others will chip in for two reasons.
“Awareness is probably the big thing for us,” Angela said. “When Nicholas had his first tumor that we found, we had never heard of neurofibromatosis. And there’s a large population of people in the world with neurofibromatosis.”
According to the foundation, NF affects one in every 3,000 people.
“The other piece is just finding treatments,” Angela said, “to find a cure and to find effective drugs that can make his life more tolerable and manageable.”
“NF affects over 125,000 people in the country, most of whom are also waiting for more treatment options,” Taylor added, “so the need to continue raising awareness and money to fund research is just as critical as ever.”
Last year’s NF Walk had more than 250 attendees in Phoenix and more than 6,500 attendees nationwide.
This year’s virtual NF Walk in Phoenix marked the eighth year the walk has been held in the Valley and it will continue through the rest of the year.
Three more walks are scheduled before they close out the season.
So far, the Shine a Light NF Walk in Phoenix has raised $14K of its $25K goal; and according to Taylor, CTF expects to exceed 3,000 participants by the end of the year.
“We are very close to surpassing $1 million raised, and we need Phoenix and Scottsdale’s help to reach that goal,” Taylor said.