ENERGY IN ACTION – EPISODE 058
Life with Leigh’s
Krista Price is the mom of two children with Leigh’s Syndrome. She shares her diagnosis journey and speaks to the importance of trusting your gut as a parent and advocating for your children to get answers.
Can you tell us about your mitochondrial disease journey?
My daughter Ellie is 8 and my son Henry is 6. Ellie started having developmental issues when she was four months old, mainly delayed in meeting milestones. She wasn’t turning over, was sluggish, and not as active as you’d expect a baby to be. Within a few years, Ellie was behind in gross motor skills, fine motor skills and speech. Henry didn’t exhibit the same symptoms. After a referral to a developmental specialist, Henry and Ellie were both scheduled for an MRI. The results revealed that the mitochondrial area of both of my children’s brains were damaged and we were referred to a mitochondrial specialist to confirm a Leigh’s Syndrome diagnosis. My kids were both prescribed the mito cocktail and they both responded well within a month.
How are your children doing today?
They’re doing really well. We just had a follow-up appointment with the mitochondrial specialist and they’re progressing and happy with where they’re at. We still have to deal with potential defects of organs related to Leigh’s Syndrome and mitochondrial disease in general. Ellie has a heart defect called Wolff-Parkinson-White (WPW) syndrome. Both Ellie and Henry have eye turns which affects their vision.
How do your kids manage having a rare disease?
They’re very resilient, but they don’t talk about it much. Ellie is more aware of the disease and the physical limitations of her body and it’s been difficult to see her struggle with that. She’s learning to navigate situations that arise at school.
What advice do you have for parents newly on their diagnosis journey or parents that suspect something is not right with their child?
You know your child more than anyone. If you think something is wrong, something is off, or something should be addressed by the doctor, challenge the doctor. Speak up and don’t be afraid to.
As a caregiver, how do you find the balance of caring for your kids and caring for yourself?
I have learned the importance of managing my mental health. I think humor is so good to have in your life. I get comedic relief wherever I can. Educating myself about Leigh’s Syndrome has helped me to cope as well. It’s important to feel the hard feelings and then move on.