CLOVIS, Calif. (KSEE/KGPE) – A Clovis family taking it day by day after they found out their 9-year-old daughter Lucy was diagnosed with a rare brain disorder and is slowly losing her motor skills.
“It’s just been so much on our family that it hasn’t broken us yet…but… I’m gonna start crying….,” said mother Becky Etheridge.
Becky Etheridge said she first started to notice something was wrong when Lucy was in 2nd grade.
“We knew something was up we knew that she had something because it was in during the pandemic when she was home, we noticed you can’t write your name anymore,” she added.
That’s when she says they took her to Children’s Hospital after several tests. Lucy was diagnosed with PKAN.
“What’s happening is that iron in her brain cannot escape, the iron is taking over her motor functions. She can’t write, she can’t hold a fork to feed herself,” she added.
Becky says make-a-wish granted lucy the opportunity to vacation in Hawaii in February.
“She got to swim with the dolphins and try snorkeling,” she said.
But her condition is progressing quickly, she now takes medicine 3 times a day, has therapy every week, and has started using leg braces to walk.
Becky says eventually she won’t be able to breathe on her own.
“Every day is scary because you don’t know what’s going to happen in her brain you don’t know…right now her hands are done, her feet are going next,” she added.
She says they planned on having more children but they got more bad news from doctors.
“They did tell us this is a genetic disorder and my genes and my husband’s genes coming together there was an 80 percent chance the next child would have PKAN as well, so we just said no we didn’t want to chance it,” she said.
Lucy turns 10 years old this month and Becky says they want to continue making every day special, not knowing how much time they have left with her, they want to take her to Disneyland.
Becky says doctors told her those diagnosed with PKAN, have made it to their mid-20s.
“We’re hoping we have longer with Lucy, it’s the little things that count, it really is, you can do the littlest thing for your child and they’re going to love you forever.”
The community has already raised enough funds for Lucy to go to Disneyland for her birthday but there are still a lot of expenses to be covered. The link to her Gofundme can be found here.