Rally for the Rileys

Rally for the Rileys: Rare genetic brain disease devastates Scottsdale family

Riley family launches fundrasier to avoid life-and-death scenarios

Posted 6/28/20

When Olivia Riley was about 18-months-old, her parents, Kendra and Dave, noticed she was starting to move backward in both physical and mental cognitive development.

Words Olivia knew and the …

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Rally for the Rileys

Rally for the Rileys: Rare genetic brain disease devastates Scottsdale family

Riley family launches fundrasier to avoid life-and-death scenarios

Posted
Each day is hard as Olivia is in pain every day and all we can do is try to make her comfortable --- all while figuring out how to get to Italy
– Kendra Riley

When Olivia Riley was about 18-months-old, her parents, Kendra and Dave, noticed she was starting to move backward in both physical and mental cognitive development.

Words Olivia knew and the great first steps forward she had taken months ago turned into crawling and the budding vocabulary words she had learned vanished.

Concerned, Ms. Riley explains, the parents took Olivia, their middle child, to the doctor’s office then an optometrist to better decipher the shaking of pigmentation in the iris of their infant’s eyes.

An MRI was ordered and the news that came after has shaped the lives of the Riley family today and every day to come after.

Olivia was diagnosed with Metachromatic Leukodystrophy, a devastating diagnosis with little prospects for cure and recovery. The disorder was devastating, Ms. Riley confirms.

The disease is an inherited disorder that deteriorates the protective covering around nerve cells --- which medical professionals call the “myelin sheath,” as well as the nerve fibers that the sheath insulates and protects.

There is no cure, according to the global medical community.

If you would like to help the Riley family go here.

Rally for the Rileys

“I feel like we are in the most unbelievable situation any parent could be going through,” Ms. Riley, a public relations professional in the Valley of the Sun, said the morning of June 29.

“When we found out about Olivia, we were rolling with the punches --- we are doing everything we can to extend her time with us, but when we found out Keira tested positive for the gene it was just unbelievable.”

Following the diagnosis of Olivia, Kendra and Dave decided to have the gene testing done on their oldest, Eva, which came back negative. However, for their youngest child, Keira’s test confirmed the gene being present in her DNA.

Ms. Riley explains both she and her husband have separate gene mutations and when one of their children get both mutations it causes MLD, the degenerative brain disorder.

“Every day is unreal,” Ms. Riley pointed out of her family’s day-to-day struggles. “Thankfully, our oldest, Eva, who is five does not have the gene. But Keira, who is just five-months-old --- is also carrying the same gene and that just broke our hearts the second time.”

As the family felt lost a gleam of hope sprouted in the form of a successful treatment for children not yet showing signs of the neurological disease.
The only problem is the medical procedure is closed for clinical trials and can only be administered at the San Rafael Hospital at Milan, Italy.

Ms. Riley says today the No. 1 focus of the family is getting to Italy and raising $500,000 to cover costs of the medical regime along with room and board for a family of five.

“The clinical trial is closed, so that means that we would have to pay for the gene therapy and lodging ourselves,” she explained. “Each day is hard as Olivia is in pain every day and all we can do is try to make her comfortable --- all while figuring out how to get to Italy.”

Go to the Rally for the Riley’s GoFundMe page here.

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