Walking the world

Mother raises money for clinical trial to extended quantity and quality of life

By Kellen Olshefski

Editor

A year after her daughter’s death, Lisa Spedale, a resident of Elmhurst, Ill., and seasonal resident of Indian Hills in Fontana, is continuing the fight against Diffuse Intrinsic Pontine Glioma and keeping her daughter’s memory alive.

Kira Faith Spedale, died of the cancer on Oct. 3, 2014, at the age of 11, but not without a fight. Lisa said it was then she knew she had to do something to help advance the efforts of the British doctor Steven Gill, whose revolutionary chemotherapy helped to extend the length and quality of life for Kira Faith, who was only the second child worldwide to undergo the treatment.

Having walked along the shores of Geneva Lake with her daughter, who eventually lost the ability to walk towards the end of her battle and for whom the mother-daughter walks had become a favored moment, Lisa has strapped on her shoes and has been walking ever since.

Kira Faith’s fight

According to Lisa, Kira Faith, the third of a set of triplets and fourth child of the family, was diagnosed with Diffuse Intrinsic Pontine Glioma an in-operable, malignant, brain stem tumor, more commonly known as DPIG, with a 100 percent mortality rate, in May 2013.

Being the tumor is on the brain stem, which regulates many of the bodies automatic functions, such as breathing, blood pressure and swallowing, Lisa said the tumor could not simply be removed and with normal chemotherapy, only about 2 percent of the treatment would actually ever reach the tumor.

Low and behold, Lisa said Gill, a physician in Bristol, England, had developed an experimental treatment in which he injects the chemotherapy drugs directly into the tumor on the brain stem, insuring 100 percent of the treatment goes directly to the tumor.

“The hope is that this clinical trial will be able to get the correct, or the proper drugs, across the blood-brain barrier and into the brain stem,” Lisa said. “So this treatment, allows the doctor to put drugs directly into the brain tumor without ever putting drugs into the body.”

With Kira Faith being only the second child to undergo the first treatment, the first being a young boy who later died, Lisa said it was a scary decision, especially since one of the factors that come into play is brain stem swelling, which is a sure death sentence.

However, Lisa said the treatment worked beautifully, greatly extending Kira Faith’s quantity and quality of life.

“Delivering drugs directly into the brain stem is very tricky, and Steven Gill in England is doing it remarkably well,” she said.

Walk the Lake

With the lake and Indian Hills being Kira Faith’s “favorite place in the whole world,” Lisa said wanting to do a fundraiser to support the treatment and children like Kira Faith it only made sense to hold it in the Fontana area.

Through the Walk the Lake for Kira Faith fundraiser on Oct. 3, and other fundraising efforts, Lisa said she hopes to raise awareness and enough funds to bring the treatment to clinical trials and sponsor 18-children, like Kira Faith, to receive the ground-breaking treatment.

She said the cost to bring 18-children to clinical trials is about $1.5 million, or about $50,000 per child.

“We’re hoping to sponsor at least one child with the funds we raise,” she said.

The all-day event, which marks the first anniversary of Kira Faith’s passing, kicks off in Fontana’s Reid Park gazebo at 7:30 a.m. with check-in and registration.

Lisa said anyone walking the full lake, 21-miles, will step off at 8:30 a.m., those walking the 10-mile route will be bussed to Library Park in Lake Geneva where will they start at 9 a.m., and the 3-mile walkers will step off at 9:30 a.m.

Events throughout the day will feature plenty of food, including a corn roast and hot dogs, a silent auction and raffle and more, which Lisa said have all been generously donated by local supporters such as Pearce’s Farm in Walworth and Daniel’s Sentry Food.

Lisa, who was sorting T-shirts for the event Wednesday morning, said she was working toward updating the foundation’s website, kiraspedalefoundation.com, this week to include full details and a schedule of the Oct. 3 event.

Participants can register online and despite posters previously saying the event was by pre-registration only, Lisa said they would be opening it to same day registration at the event as well.

Walking the world

On June 19, with the goal of raising funds and awareness for Gill’s treatment, Lisa kicked off Walking the World for Kira.

Up until a recent injury, Lisa said she has been walking 10-miles a day, 6-days a week, something which she intends to do until she fulfills the distance from Chicago to Bristol, England – 3,877.8 miles – asking people to sponsor her for each mile she walks.

She’s gained support throughout her journey, raising more than $10,000 for the cause to this point, and is getting the help of others in reaching her nearly 3,900-mile goal, with some walking for her while she’s unable to, much like she used to do for her daughter. As of about 11 a.m. on Wednesday, Lisa said three people had already sent her a total of about 8-miles.

“People are excited to help me fulfill the mileage from Chicago to Bristol,” she said.

For more information

To find out more about the Oct. 3 event and register, Kira Faith’s story, Gill’s treatment, Lisa’s efforts to raise funds and to donate, visit the foundation’s website.