How Raising Kellan Started in 2019

Most non-profits about children with a disability begin with a heart-rending story and the endless search on how to fix the disability. 

The start of Raising Kellan wasn’t about that. 

You see, in June 2019, while visiting family in South Africa, I was asked to give a speech to health professionals at the Open Air School in Durban, and the feedback I received was unexpected.

Sure, people were engaged. But, could I share my perspective as a physical therapist and mother of a child with cerebral palsy with other parents raising children with complex medical needs, as well? 

I was reluctant at the thought of sharing my experience, but I did. 

I returned home and this burning thought became the blog and podcast that formed the bedrock of the non-profit organization, Raising Kellan. 

Since 2020, Raising Kellan has supported parents in the US, South Africa and Europe on their journey, negotiating the uncharted territory of raising children with a disability.

Are you a parent bewildered by your child’s disability?  

We are a community connected by a diagnosis, yet positively embracing our lives, and we want you to know, you’re not alone.

Raising Kellan was created by parents like you for parents like you.  

About Marsh

I know how overwhelming a diagnosis of a developmental delay or disability can be for your family. 

Suddenly, your world goes into a tailspin and you begin to ask yourself questions like, How is this going to affect my child? How am I going to do this? Who can I reach out to? 

Am I right? 

My son, Kellan, was born in South Africa, on June 21, 2012, prematurely at 26 weeks old, weighed 840 gr (1.8 lbs), and was 35 cm (13,7 inches) long. 

A teeny-tiny human being. 

At 14 months he was diagnosed with cerebral palsy and our lives changed forever. 

It was frustrating to see his muscle spasticity block his development. Our physiotherapist mentioned a procedure called selective Dorsal Rhizotomy (SDR), an invasive surgical technique that cauterizes the sensory nerves of the spinal cord, using EMG as a guide.  

So, we moved back to the US and I found a full-time position as a physical therapist at Physical Therapy of Dyersburg in NorthWest Tennessee. 

On March 12, 2015, Kellan received his surgery and six months later he started ambulation with a gait trainer without trunk support and was able to sit for the first time on a regular chair at a kiddie table. 

How exhilarating to see my little munchkin move, all on his own! 

And yet, by 2017, I couldn’t figure out why Kellan’s individual muscles wouldn’t fire, even after receiving outpatient therapy and me following through with a home program carried out 5 days a week for 1 hour each.  

It was during that time I received a letter about a course from Karen Pryor, Ph.D., PT, DPT, and her work on neuroplasticity. Karen has published the principles of her work in her book titled, Ten fingers, Ten Toes: Twenty Things Everyone Needs to Know: Neuroplasticity for Children.  

Personally, it’s a must-read for pediatric therapists and parents of kiddos with developmental delay. 

I signed up for the course and was blown away. 

Not only that but, because Karen was just 3 hours away in Nashville,TN, I was able to take Kellan for a consultation.  

About Kellan

Fast forward 10 years and Kellan is in the 4th Grade now.

His day is split between a mainstream class for reading in the morning and special education (SPED) for math class in the afternoon. 

Kellan ambulates with his crutches and switches to a walker when he goes to recess to strategically conserve his energy throughout the day.

On excursions or longer journeys, he’ll use a wheelchair.

Our sparkling paraprofessional, Ms. Deana, is key to helping Kellan through his school days.

It’s true, Kellan’s life revolves around therapy targeting his physical self.

However this year our family is geared toward his academics.

Sure, we have our daily physical therapy routine which takes place in the morning and Kellan is even slowly taking over accountability but afternoons are purely for putting the pieces together for foundational reading.  

We are grateful, his school has provided much-needed support in modeling the framework, “7 habits of healthy kids”, something we also integrate at home. 

At present Kellan is involved in the 4H club for extramural activities and wishes to be more involved with the children's church choir.

I am amazed. 

My boy is becoming greater than the sum of his individual parts. 

He’s developing the sure-fire confidence in speaking his truth and taking pride in his disability as part of his identity. 

As parents, we support him to fully participate and integrate into the community, though it may not always be easy. 

Let’s walk hand in hand

It’s easy for fear and anxiety to take over when we’re faced with the unknown.  

But believe me, your child has the ability to make life-changing progress.

I hope you find the comfort, connection and community you are looking for. 

The fountain of knowledge flows freely. Jump in and feel empowered!

Love,