Keep Rockin’ Cleveland 2024 Conference - Join us June 13th-15th - Learn more and register at this link.

Blog

CDKL5 Spotlight on Brooklynn!

Spotlight on Brooklynn! Mom, Ashley, shares about her sweet daughter.

Brooklynn is 3.5 years old and lives in San Diego, CA with her family. She began having seizures at 2-months-old and received her Cdkl5 Deficiency Disorder (CDD) diagnosis at 9-months-old.

Along with CDD, Brooklynn also has Cortical Visual Impairment. She has done Anat Baniel Method (ABM) Therapy, Physical Therapy, Occupational Therapy, Vision Therapy, Hippotherapy and Aqua Therapy. I can 100% say that she prefers Hippotherapy and Aqua Therapy for sure! ABM Therapy played a huge roll in getting Brooklynn to push into the sitting position and sit unassisted by 6 months of age. We have been fortunate that she has always had great head control and a very strong core.

Hippotherapy is a favorite of our entire family because we enjoy watching Brooklynn have such a great time. We live on 4 acres and I grew up riding horses so it’s fun to see her doing something similar to what I was doing at her age. She has learned how to sit up taller and how to maintain her balance while turning the pony side to side. Since we live in San Diego a pool is a must for sure.

Brooklynn enjoyed Aqua Therapy so much that we have asked for a swim spa for her Make-A-Wish option. She still does not like her face or top of her head in the water, but does like to kick and splash a ton! We are currently working on pull to stand at Physical Therapy. She will bare her weight and take steps when someone can assist and hold her hands or hips for balance. Last week she walked around the entire therapy unit with her therapists help!

At home Brooklynn is always on the go.

She can hop around on her knees all over the living room and can roll in any direction she pleases. We have purchased fun “equipment” that we use daily at home. Stations are set up so Brooklynn doesn’t get bored with doing the same thing for too long. A few items we have are a desk and chair, a bubble wall, switch operated toys, a light table and also an iPad Pro.

For Christmas last year we purchased her a pod swing with lights as a place for her to be able to chill out and relax. Another favorite activity for Brooklynn is to go on the swings and also ride with her big sister in her Golf Cart. She enjoys going fast and loves the wind blowing in her face. On family outings we always include Brooklynn and she really enjoys being social and interacting with everyone around. Although she does not make eye contact or verbally communicate, she interacts in her own way.

CDD has been a learning experience and has made us appreciate all the small things in life.

Every little new achievement is a celebration and we strive to find a positive thing Brooklynn does in every day. She has brought so much joy and love in our family and to everyone who meets her. Her smile is the best and her laugh is contagious! Everyday spent with her is a gift and nothing is taken for granted.

My best advice is to take it one day at a time, don’t compare your child with others, look for a positive in every day, push to make doctors listen to you, follow your gut, soak up the good days, slow down and join a support group. Know that we are all one family and reach out for help and advice whenever you need it.

You can keep up with Brooklynn by following her Facebook page Believe in Brooklynn.