Life With Lia – Overcoming CP & High Tone

by Aculbertson


“No one loves life more than Lia.”

That’s how Kelly described her three-year-old daughter. And it’s quite the statement considering all the challenges Lia’s faced in her young life.

Cerebral palsy. High muscle tone. Apraxia of speech. Heart surgery. Just to name a few.

But she’s as easy-going as she is determined. We talked to Kelly to learn about her daughter’s story and find out how Lia is thriving today:


How would you describe Lia?

Lia is a happy, brave, and spunky little three-year-old girl! She is very active; always wants to play outside and just run free.


Can you give us a brief overview of her medical story?

Lia was born, full-term, after an uncomplicated pregnancy. Shortly after birth she started having seizures. An MRI revealed Lia suffered from a left sided ischemic stroke before she was born. We also found out she was born with two heart defects, pulmonary stenosis and an atrial-septal defect. She had heart surgery at three months old. Lia’s stroke has caused further diagnoses of spastic hemiplegic cerebral palsy affecting the right side, epilepsy, and apraxia of speech. She is nonverbal still at this time.


What challenges does she face today?

Lia’s biggest challenge would definitely be her speech issues. She is nonverbal, so that is really frustrating for a three-year-old. Lia also has epilepsy, which has affected her development. In the past, she lost skills after having seizures, and has had to work hard to regain them. Other challenges Lia faces are related to her cerebral palsy and muscle spasticity, in regards to gross and fine motor skills. Lia has multiple therapy sessions each week to help her in all of these areas.


Which Surestep braces does she use?

She wears an Indy 2 Stage PLS on the right and a Surestep SMO on the left. It’s been the perfect brace for her. Just enough support, but gives her some good natural bounce to her step. Even though her left leg has normal function, the spasticity in her right side can cause some “overflow” tone issues in her left leg at times. The Surestep SMO just helps provide a little bit of extra support in general to even things out.



How have the Surestep braces helped her?

Lia was a brand new walker when she started using Surestep braces at 18 months old. The difference in her gait when she is barefoot compared to when she is wearing her Surestep braces is like night and day! People are always amazed when they see her before and after videos. Lia’s spastic cerebral palsy causes her to walk with a circumduction gait. Basically, when she walks, her right leg swings out away from her body, her knee is hyperextended, her ankle pronates and she walks on her toes. This is due to the tightness and shortening of her leg muscles. Before Surestep braces, Lia would trip and fall all the time. Now, with the help of her braces, Lia can run, jump, and gallop. She can climb stairs. She can even scale the biggest playground equipment with just a little bit of help.


You’ve used both Surestep braces and non-Surestep braces. What makes Surestep different?

Lia’s first pair of braces were non-Surestep. She got those around 14 months old. They were bulky, with a very rigid plastic. They were near impossible to find shoes to fit them. I’ll be honest, Lia hardly wore them. She could barely get up off of the floor in them, they were so heavy. After she outgrew that first pair, our physical therapist got us set up with a new orthotist, and they liked using Surestep products. What a difference! The plastic is very thin and flexible, making for a much better fitting and sleeker brace. We are now on our third set of Surestep braces and have been extremely happy with them all. They are lightweight, comfortable, and Lia has gained so many new gross motor skills since she started using them.


Any advice for other parents?

It sounds so cliché, but really, just take it one day at a time. When Lia was a baby, I used to worry about her future so much. I was missing out on enjoying those sweet baby moments because my mind couldn’t stop thinking about whether or not she would go to the same school as her older siblings, or drive one day, or ever live on her own, or get married. I often have to tell myself to stop looking at her diagnoses for a minute, and just see Lia.

Also, find other special needs parents to connect with; whether it be in person or through social media. Reach out to them, ask questions, read their stories. Get to know them and their children. Their child doesn’t even need to have the same diagnosis as yours. They will become your lifeline, and greatest source of information and support. Having a child with special needs is hard. Navigating the system is hard. The emotions involved are beyond hard sometimes, and no one truly understands what that feels like besides another special needs parent. Find your village.

Want to share your child’s story with Surestep? Email Andrew at aculbertson@surestep.net.

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