A boy named Noah – a quest for dignity

In an aimless effort to fall asleep late last night, I decided to do a Google search on ‘The beginners guide to running’. Now, for someone who has already completed a half marathon and a few shorter races in the past year, I still don’t know why I did a search on how to run.

The advice was pretty standard, start slow, build up, my personal favourite ……learn to love the burn, rest, repeat and you will get better.

Great advice, but somehow my thought drifted to a beautiful three year old boy with the bluest eyes, that suck you in and somehow lifts your spirits without saying a word. This particular boy is my nephew; Noah Muller and this is his story.

Noah, who lives with his family in shared accommodation in Swellendam, South Africa was diagnosed with Dystonia and Spastic Quadriplegia Cerebral Palsy when he was about 1 years old.

In layman terms, a happy three year old boy trapped in a body that has a will of its own at the best of times, a body that will most likely never run or ride a bike on a hot summer’s day. A body that limits his ability to live a life with dignity.

Spastic Quadriplegia, also referred to as spastic quad or spastic quad CP, is a form of cerebral palsy that means the “loss of use of the whole body.” It’s the most severe of the three types of spastic cerebral palsy, marked by the inability to use the legs, arms and body.

Spastic quadriplegia is generally caused by brain damage either before birth, during, or shortly after. There are many factors that can play into an infant developing brain damage, including fetal infections, maternal infections, exposure to toxins, or medical negligence. We believe the latter to be the cause of Noah’s medical condition.

Despite our absolute distrust in the national medical system we have decided to channel our efforts on finding a medical solution that could improve the quality of live for Noah – however small.

Noah's parents Pieter and Marinda have made peace with the fact that Noah may have physical limitations but as his parents, they have made it their absolute duty to explore every opportunity to provide a better life for Noah.

While Noah can’t fully communicate, there is a tiny human behind those bright blue eyes. A tiny human that laughs when he gets tickles, cheeky licks from the dogs and cuddles from his oupa and ouma. He is a child like any other, who deserves a chance to enjoy life, no matter the hurdles along the way.

In a recent visit to his specialist, Noah's parents were informed of a treatment available in Europe.

Treatment that could reduce the spasticity meaning he could learn what we take for granted; how to sit, hold a cup, feed himself!

Now for the technical stuff!

The main method of treatment for patients suffering from musculoskeletal system pathologies used in the Institute of Clinical Rehabilitology is a unique surgical technique which was invented and put into practice by PhD Professor V.B. Ulzibat.

The infantile cerebral paralysis treatment has several stages. On each stage the surgeon debride the necessary amount of muscular and fascial contractures at a time under general anaesthesia, the number of PFT performed under local anaesthesia varies from 4 to 6 per each stage.

The removal of muscular contractures and pain syndrome enables substantial increase of the range of motions. It helps to receive new motion skills and to improve the existing ones. The increase of the overall motion activity stimulates mental development, broadens the scope of interests, and betters self-service skills.

In order for Noah to receive the treatment we need to raise R200 000 to cover medical cost, accommodation and general living expenses for approx. six months while in Europe.

With limited funds available we have to rely on the kindness of others in the hope that they can make a donation and share this post with friends and family. Every donation will take us one step closer to improving the quality of life for Noah. A three year old boy who wants to live a life with dignity.

For more information please click on the links below.

https://www.cerebralpalsyguidance.com/cerebral-pal...