Happy Birthday, Lydia - CDKL5 -

My niece, Lydia, was born 19 years ago. She's the youngest of 6 children. She's a tall, slender, red-headed wonder.

Lydia loves to hold hands and kiss heads.
Lydia loves to cuddle with her brothers-in-law and brother.
Lydia loves babies.
Lydia loves counting and her ABC's, especially if someone will count or do the alphabet with her.
Lydia loves music - her iPod and speaker are with her constantly.
Lydia loves animals, swinging on a swing, and water.
Lydia is a joy, a nuisance, a handful, fun, funny, and typically very happy.

Lydia is a perennial 2 year old.
Lydia doesn't sleep.
Lydia isn't potty-trained.
Lydia can't dress herself.
Lydia socializes on her terms.
Lydia is stubborn.
Lydia pulls hair and pinches.
Lydia's diet typically consists of dry cheerios, goldfish crackers, and marshmallows.
Lydia has a feeding tube (G-tube) which her mother or father accesses 2-3 times a day, to feed her.

Lydia started having seizures when she was 4 weeks old. She has CDKL5.

Most children with CDKL5 do not walk, are in wheel chairs, can't talk, can't feed themselves, and are totally dependent on others. They typically have sensory issues, scoliosis, stomach/digestion issues. This disorder mainly affects girls. There is no known cause for the genetic mutation, and there is no known cure.

CDKL5 is considered an orphan disorder - there isn't a lot of testing, medical knowledge, research, resources for this disorder. Her parents finally found this diagnosis a couple of years ago, after years and years of doctor's appointments, research, sticking up for themselves, and being Lydia's advocate.

They have raised her, as their toddler, for 19 years. Lydia's parents have created a home that is comfortable for Lydia, including a special room, a unique bed, wide halls (if she ever needs to be in a wheel chair), just for Lydia.

Lydia's parents have created a full life for Lydia. Dressing stylish with nicely fixed hair, Lydia is never dirty or sloppy or stinky. Lydia's days are rich with experiences. She goes to school, has quiet time, has friends, goes to a Young Women's group, has a Sunday School class to herself, is involved in 90% of the family's activities, and has sensory experiences from petting dogs and riding horses to field trips with her school. Lydia has a part-time care-giver who caters to Lydia and loves Lydia. Lydia truly blesses the lives of everyone who has the opportunity to know her.

Lydia's parents are as amazing as Lydia is. They are totally devoted to Lyds. Their love is unconditional. Neither of Lydia's parents has slept through a night in 19 years, because Lydia hasn't slept through the night, ever (sometimes she doesn't sleep at all). Lydia is their life, yet they've managed to have quality and quantity time with each other and their other 5 children. Lydia's parents worry about Lydia aging as they age. They have as many unanswered questions now as they did when Lydia first started with her seizures. But as with their constant advocating and caring, they will find answers, because that is who they are.

Lydia - what a girl. Lawrence and Maria - amazing parents. Taylor, Sabrina, Danielle, Calais, Clara - fantastic siblings. Lydia has been blessed with this family. And Lyds' family and extended family have been blessed with her.

Happy Birthday to you, Lydia. I love you.

Lydia - top left, with siblings and cousins. Summer 2006. 

Lydia, stubbornly sitting, delaying family pictures. Fall 2017. 

Lydia, 2017.