Ahwatukee family seeks treatment in Italy for daughter diagnosed with rare brain disease
AHWATUKEE, AZ (3TV/CBS 5) - An Ahwatukee family is dealing with a worst-case scenario after two of their three young daughters were diagnosed with an extremely rare brain disease. Only one of the girls is eligible for gene therapy, but the treatment is in a different country, and they need help with finances to make it possible. Dave and Kendra Riley have their hands full with three girls: 5-year-old Eva, 2-year-old Olivia, and 5-month-old Keira.
But this past year, they noticed Olivia was starting to have trouble walking and talking. “Then the irises of her eyes started vibrating a little, and we’re like okay let’s get her checked out,” said Kendra.
In March, a neurologist diagnosed her with Metachromatic Leukodystrophy, known as “MLD,” a rare genetic brain disease. Her motor skills have quickly been regressing since. “Most cases of MLD at her age group, without any treatment, she’ll maybe have another 2 to 4 years left,” said Kendra. “There isn’t a day that goes by where I don’t cry somewhere at some point in time because it’s just, what can we do to take the pain away?” said Dave.
They take Olivia every week to a clinical study treatment in Iowa, but because both Kendra and Dave are carriers of genes that formed the mutation, they had to get their other two daughters tested. Their oldest, Eva, is only a carrier and will live a normal life. But two weeks ago they got the results for baby Keira. “She came back with both gene mutations, so just like Olivia, she has MLD,” said Kendra.
Because Keira isn’t showing symptoms yet, she’s eligible for a rare gene therapy treatment in Italy, where 29 kids in the world have gone through it. Olivia will never be able to recover, but they may be able to save Keira if they can get to Italy in the next month. The community has been raising money to help them get there amid the pandemic, and for that, the Riley’s are grateful.
“The smallest donations of a dollar or five dollars are just as heartwarming to us as the ones that are larger because that could be all they have,” said Kendra with tears in her eyes. Here is a link to the Riley family’s GoFundMe if you would like to help donate to their expenses and the girls’ treatment.
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