above image by Sandro Georgi Photography
In honor of Mother’s Day, Patient Worthy is featuring some of the Rare Moms in the community, those caring for children with a rare disease or those with a rare disease themselves.
A few months ago Patient Worthy had the privilege to sit down with Kristina and hear about her experiences living with narcolepsy. She says that narcolepsy has impacted every aspect of her life.
“I have two kids, I have a 15 month old named Emerie and I have a 8 and a half year old named Lorelai. Lorelai is…well they’re both very sweet, but Lorelai is very energetic; she has quite a personality. She is very independent. She’s just a sweet little girl, very loving.”
Kristina adores her girls and wants to be the best mother she can be for them. Narcolepsy, however, will rear its head and she’ll have to take things a little slower than she’d like.
“Dealing with narcolepsy in my life now is… it’s pretty difficult with two kids. A hyper one and a little one that needs her mama all the time, it’s draining. I don’t think people understand quite how draining it can be and it’s a burden on my family. It affects their lives so much and it’s not their fault. I love being my girls’ mom. I just wish I could be a better one for them.”
Despite this, Kristina is determined anything that narcolepsy throws in her path. She refuses to let it get in the way of being an active part of her girls’ lives. Kristina is ready to make it to school plays and take them to dance lessons and enjoy every minute. Take a look at the clip below to hear more and click here for more of Kristina’s story.
Are you a #RareMom? Let us know your story today by clicking here!