‘My son had hope, he was always smiling’ | The Post – Independent Online

ASHIKA Rubikisson had a normal pregnancy with no complications.

Her son, Shannon, seemed to be developing normally in his toddler years, but at around 5, his family noticed he had trouble walking.

He also struggled to climb the stairs and often fell, even when an adult held his hand.

We also noticed an abnormality with his calve muscles, so we took him to different doctors, said the Pietermaritzburg mother.

It wasnt until Shannon was around 8 that he was diagnosed with Duchenne muscular dystrophy.

It came as a shock. The doctors explained that there was no cure and a short lifespan, and Shannon had one of the most severe types of muscular dystrophy.

According to the Muscular Dystrophy Foundation (MDF) of SA, muscular dystrophies are a group of genetic conditions characterised by progressive muscle weakness and wasting of the muscles.

There are more than 70 neuromuscular disorders and these affect 1 in every 1200 children worldwide. There is still no definite cure.

According to musculardystrophynews.com, the life expectancy can vary between the types of muscular dystrophy.

While some cases may be mild and progress slowly, others can cause severe muscle weakness and disability.

Some people with muscular dystrophy may have a reduced life expectancy (late teens to early 20s), while others have a normal lifespan.

Children diagnosed with symptoms of this condition at bar hospitals (base hospitals in their respective residential areas) in KZN are referred to the Peadiatric Neurology Department at the Chief Albert Luthuli Central Hospital in Durban.

Once the condition is confirmed, the MDFs KZN branch is roped in to provide support and assistance.

* Hope even where there seems to be none:

Rubikisson said her son died in June 2016 at the age of 22.

It was very difficult. First, it was the shock of dealing and accepting that Shannon had the disease, for which there was no cure.

Then he ended up in a wheelchair. But through everything, he had hope and gave us hope.

He would say Mummy when I walk, Im going to do this and that. He would tell us what (medical information) to look up on Google.

And we never discouraged his hope. He never let his sickness put him down. He was always smiling.

He would always say One day I am going to walk. He was always pleasant. It was a pleasure to take care of him.

* One day at a time:

Her advice to parents with children with muscular dystrophy: Take it one day at a time. Be positive Never let muscular dystrophy bring you or your loved ones (who have the disease) down to the point where you lose hope.

She added that raising awareness around the condition was important.

We never knew about it until our son was diagnosed. We never knew about the depth of it, and the support out there until the MDF volunteers explained and helped us learn more about muscular dystrophy and how to manage it.

* The local situation:

According to statistics from the MDF of SA, 884 people are affected by the disease in KZN, Gauteng, and Cape Town - with 128 of the patients from KZN.

Raj Mahadaw, MDF KZN branch executive committee member and a volunteer, said that with September being Muscular Dystrophy Awareness Month they wanted the public to get involved as volunteers and to help fund-raise to support families with children with the disease.

Funds are used for, among other needs, motorised wheelchairs, special beds and mattresses, and special services to help give these kids comfort and a bit of independence.

This is a life-threatening condition with no cure, so the best we can do is to keep them as comfortable as possible.

But many families cannot afford these comforts.

Thats where fund-raising and support are key.

We appreciate and welcome organisations, such as the Sath Guru Samajim Ashram, in helping us create awareness of this life-threatening condition.

Guru Sagren Moodley, from the Chatsworth-based ashram, which hosted the launch of Muscular Dystrophy Awareness Month, said as a spiritual and community leader - and as someone who cared for a loved one who used a wheelchair - his heart was with those who suffered from the condition and their families.

My father used a wheelchair. I used to feed him, bathe him and care for him, so I can feel their (the families) pain.

It is important for us as a community to be aware of such illnesses and health issues and support the affected families.

* For information on muscular dystrophy and on volunteering or supporting the MDF, call 031 332 0211 or e-mail [emailprotected]

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