Az. Parents Plead for Help to Secure Treatment for 2 Daughters with Fatal Brain Disease
Olivia, 2, has already lost her ability to walk and talk, but there is hope for 5-month-old Keira, who is not yet symptomatic
A family in Phoenix is desperately seeking help to afford a special treatment overseas after two of their daughters were diagnosed with an aggressive and debilitating brain disease that could ultimately kill them both one day.
Earlier this year, Dave and Kendra Riley's world was flipped upside down when they discovered that their 2-year-old daughter, Olivia, had a "highly progressive and rare genetic brain disease" called Metachromatic Leukodystrophy (MLD), according to a GoFundMe page set up on the family's behalf.
Months later, as Olivia's condition worsened to the point where she can no longer walk or talk, things became even more heartbreaking for the family after they welcomed their third daughter, Keira, and learned that she also has MLD.
As their days with Olivia become "limited," Dave, Kendra and their eldest daughter Eva, 5, now find themselves in a race against time to raise enough money by the end of July so that they can afford a special gene therapy treatment — only available in Milan, Italy — that could potentially save Keira's life.
"We have so much hope for Keira because of this treatment and want to do everything we can to give Eva (and ourselves) as many happy memories as we can with her sisters," the parents wrote on the GoFundMe. "Please help us raise enough funds to give our Keira the chance at a normal life; to save her life from the horrible disease that is MLD."
Dave and Kendra first noticed something seemed wrong with Olivia in November 2019, according to the GoFundMe.
"Olivia began having difficulties walking, would tilt her head and we then noticed a vibration in the irises of her eye," Kendra explained. "Concerned, we took her to our pediatrician who suggested starting PT and going to an ophthalmologist."
The ophthalmologist ordered an MRI, and in the meantime, the Phoenix parents welcomed their third daughter, whom Kendra said was "perfectly healthy" at birth on Jan. 9.
But Olivia's condition continued to get worse, and Dave and Kendra were faced with even more of a challenge in getting her adequate medical attention due to the coronavirus pandemic.
After finally getting an MRI, which showed "vanishing white matter in her brain," and seeking out multiple opinions from neurologists, a genetic test confirmed that Olivia had MLD.
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According to the U.S. National Library of Medicine, MLD is a genetic disorder that affects cells in the nervous system which produce myelin, the substance that insulates and protects nerves.
The disease causes a progressive loss of brain functions and motor skills, such as the ability to walk and speak. It also can lead to loss of sensation in the hands and feet, seizures, paralysis, blindness and hearing loss and eventually cause one to become unresponsive due to a "lost awareness of their surroundings."
In Olivia's case, because it presented so early, doctors have said she is not expected to live past 4 to 6-years-old, according to the GoFundMe.
"Dave and I were devastated. How could this happen to our sweet Livvy?" Kendra wrote, noting that she and Dave even had genetic testing done before they started having kids and were cleared from MLD. "Unfortunately, our form of MLD is so rare that they don’t even test for it, they only test for the five most common mutations."
Kendra and Dave eventually learned that they both carry the genetic mutation, which presents their kids with a 25 percent chance of developing MLD, so they immediately had testing done on Keira and Eva.
As they awaited the girls' results, the parents continued to take weekly trips with Olivia to Iowa, where she has been receiving treatment and medicine through a port.
"So far, we have not seen a difference but we are hopeful that it will slow the disease down so we have more time with her," Kendra wrote. "Olivia has lost her vocabulary, cannot pronounce most words, and experiences some form of pain (from moderate to severe) on a daily basis."
By June 19, results confirmed that Eva was a carrier for the disease like her parents, and will be unaffected by it, but her little sister had both mutated copies of the gene and MLD, according to the GoFundMe.
"Hearing that not one but two of my daughters’ lives will be cut short from this awful disease is too much to bare," Kendra wrote.
The parents said they immediately reached out to resources for MLD-affected families after the heartbreaking news and learned of "a cutting edge treatment option" called gene therapy, which could potentially give Keira the chance for "a normal life."
Unfortunately, the treatment is only available in Milan, and because the clinical trial was fully enrolled, Dave and Kendra said they would have to pay out of pocket for the family to move to Italy for five months.
Additionally, Dave and Kendra explained that if they were to temporarily move to Europe, they would also have to transfer Olivia's treatments there and make sure that their insurance will cover them.
"It will cost upwards of $500,000 for the treatment, lodging, travel and expenses for our girls’ day to day care," Kendra explained. "This does not include the trips we will need to take back to Italy every 6 months for Keira’s check-ups. Dave and I will also not be able to sustain a stable income while we spend this time with our girls."
With no other options, Dave's sister Nina Riley set up the GoFundMe on behalf of the family on June 25. Since then, they have raised over $171,000. A tax-deductible fundraising page was also set up on the Armer Foundation for Kids website.
"Your support will not only help save our daughter’s life but further the advancement of gene therapy, which has the potential to cure hundreds of rare diseases," Kendra wrote on the GoFundMe. "We could not thank you enough for any help or support during this time."