Paisley’s Story, As Told By Her Mom

The Thursday before Memorial Day 2016 changed our lives forever. Our four month old daughter, Paisley Skye, was diagnosed with Infantile Spasms or West’s Syndrome (a form of epilepsy), bilateral MCA strokes and perinatal ischemic. The perinatal ischemic has caused her to have spastic quadriplegic cerebral palsy. Along with her cerebral palsy, she will have some intellectual disability from her stroke that caused permanent brain damage on both sides of her brain. Paisley is considered legally blind and has some hearing issues as well. We will not know the extent and severity of Paisley’s disabilities until she starts to grow more and ages.

Paisley’s medicine is constantly changing and very costly. She needs to have shots daily along with vitamin B6 and Prilosec. Paisley has had her blood pressure and blood sugar tested on a daily basis since the diagnosis. She has a home nurse who visits twice a week and is also working with several different therapists. She continues to receive EEG’s to make sure her spasms (seizures) are diminishing. Her care and doctor visits will continue to vary and change with her disability. Eventually she will need braces to walk or a wheelchair. All of this depends on her growth and her physical abilities due to her bilateral brain damage.

In October we spent all but 8 days in the hospital with her. She had a feeding tube put in, due to the fact she was listed as failure to thrive, and started a soy based ketogenic diet to help control her spasms. The diet did not work for her and she was taken off of it. Hospital stays have become a norm for us and will not change anytime soon.

We anticipate many surgeries in her future as she grows to help with her motor skills. Paisley cannot go to daycare due to her having a poor immune system from all of her medicines and her brain damage.

Despite the challenges she faces, Paisley continues to light up our world. She is a blessing and has so much love to share.

Paisley and Puppy

Paisley Skye Charlier and the Charlier family are the recipients of this year’s Run the Ripple 5K. If you are interested in running or walking the 5K, please visit Get Me Registered to sign up! If you would like to hear more about Paisley’s story or get involved with the 5K as a volunteer, please email us!