Ahwatukee parents Dave and Kendra Riley weren’t quite sure what to expect when they accepted a request for a Zoom meeting with Desert Financial Credit Union CEO Jeff Meshey last week.
The parents of three daughters – two of whom are in a life and death struggle as they battle a rare and highly-aggressive terminal brain disease – have had their lives upended as they seek avenues to prolong their two youngest daughters’ lives.
Aided by the Ahwatukee-based Armer Foundation for Kids and a GoFundMe account set up by relatives, the family scurried to raise $500,000 to enable them to quickly move to Italy to obtain treatment.
It was a daunting goal, as the AFN detailed in a story July 9.
“Desert Financial reached out to me on Facebook after their CEO Jeff Meshey read about our story,” Kendra Riley said. “All we knew before our Zoom chat with them was that they wanted to hear more about our situation, how things were going, and that they were interested in helping through their Random Acts of Kindness program.”
Jeff Meshey – a father of four girls, two in college and two in elementary school – said he was moved by the story.
“It was because I have four daughters that their story really moved me, so I wanted to help anyway I could,” said Meshey, a former Ahwatukee resident now living with his family in Chandler. “You would do anything you could to save your children.”
Since its 1939 founding, Desert Financial, formerly Desert Schools, has been committed to giving back to the communities they serve. With 47 valley locations, including one at 4940 E. Ray Road in Ahwatukee, Desert Financial recently surpassed the $1 million mark in donations for this year alone and its philanthropic program is called Random Acts of Kindness.
It was through Random Acts of Kindness that the Rileys received their unexpected donation of $10,000.
“I was a bit nervous about the Zoom call because I didn’t know how they would react because they don’t know us and we didn’t know them. I was very touched to see their reaction,” admitted Meshey.
Since AFN reported on the couple’s plight, the community has stepped up to help the family.
The gifts have given the Riley family hope.
“Thanks to some very generous private donations, in addition to Desert Financial and other local companies such as Sanderson Lincoln Ford and Sunland Asphalt, we’ve nearly reached our goal,” said Kendra.
“Italy is very well within our reach now and we cannot thank the community enough for their support. Keira’s life has depended upon it and we cannot wait to one day see her walk, talk, run and play as any other child would,” she said.
“By next week we hope to get our medical visas and book travel and lodging.”
She said the medical team at San Raffaele Hospital in Milan, Italy, is tentatively planning to begin Keira’s treatment no later than mid-August.
Dave and Kendra Riley’s two youngest daughters – Olivia, 2, and Keira, six months – both have metachromatic leukodystrophy (MLD), a genetic brain disease that presently has no cure.
After months of waiting due to COVID delays, test results received in June revealed the couple’s older daughter, Eva, like her parents, is a carrier and will be unaffected by the genetic disease.
The Riley family story is all the more heartbreaking as the couple had undergone DNA testing done before having children. MLD was among the negative results from the tests.
The couple learned too late that the testing targeted the five most prevalent gene mutations that lead to MLD. As they painfully discovered, there are many more.
Both Dave and Kendra Riley express hope that their experience will mean expanding the scope of the genetic testing for leukodystrophies.
“No parent should ever have to see their child suffer in this way and have to say goodbye to them so soon,” said Kendra.
It has been a long haul for the parents and their children.
Kendra was expecting her third daughter when, last November, the couple observed their normally active Olivia having difficulty walking.
An odd vibration in the iris in one of her eyes further heightened their concern.
Their pediatrician referred them to an ophthalmologist who ordered an MRI. The test showed vanishing white matter in Olivia’s brain.
After one neurologist suggested waiting a year to see how their daughter progressed, they sought another opinion.
The second neurologist was Dr. Vinodh Narayanan of Arizona Pediatric Neurology & Neurogenetics Associates who confirmed Olivia had MLC, which destroys the protective fatty layer surrounding the nerves in the central nervous system, aggressively taking away motor function and other abilities.
Their toddler has already lost much of her vocabulary and continues to have difficulty walking. Her parents say she suffers pain daily.
“When symptoms show early in life, such as in Olivia’s case, most children aren’t expected to live past 4 to 6 years old,” said her mother “Keira, however, is not symptomatic yet, and we must act quickly to save her life.”
The Riley family currently travels weekly to Iowa for an MLD clinical trial for symptomatic patients that hopefully can slow the progression of the disease.
At the same time, they’re making plans to move the family to Milan in hopes of seeking gene therapy treatment for baby Keira while pursuing weekly treatments for Olivia in France.
And that is what Desert Financial Credit Union’s $10,000 Random Acts of Kindness gift, along with other donations - many from individuals the Rileys have not yet met – is helping to provide.
In the interim, the couple tries to balance their professional lives with all the mechanizations of moving to Italy. Kendra, owner of Dawning Public Relations, has two employees helping run her business while David, a financial advisor at Strategy Financial Group is working with current clients remotely.