Caelen's Quest: Dong Qiang Dong Qiang!!

17 February 2016

Dong Qiang Dong Qiang!!

This morning, we attended a mini CNY celebration at Cayla's school. The whole family participated because she would be performing a dance item and was looking forward to our attendance. Despite wanting to cheer her on, I was quite concerned with C's trip to the school, worried he might pick up nasty virus/bugs since he has not fully recovered. My concern was confirmed when coughs by the little ones filled the room. I tried hard not to be bothered by it, instead focused on C. But subconsciously, it was tough.

Anyway, first greeted us was a lion dance performance. It was C's first time watching one. He was receptive except the occasional complaint of loud dongs and clangs, which was amplified in a closed environment. Before we left for the school, C explained that the lion was a fake because men were hiding inside and they spit candies and vegetables (haha funny how he put it).

He later took pictures with the 'monkey' monkeying around but failed. C was totally uninterested.

Grinning while watching lion dance / Weird looking monkey

After Cayla's dance performance, C and I took a brief stroll in the park. We stopped by the community garden to admire the blooms when an uncle spotted me from a distance, came over and invited us in. Some lovely pictures I snapped while C was busy chatting with auntie and spotting bricks, pebbles and bees.

As usual, our walk in the park became an extended one after being chatted up by aunties curious about his NG tube. Funny how negative it always turned out explaining his condition, "he has a condition"; "he is suffering from SMA" even though I no longer view it as a disorder but just a child who does things differently. Nonetheless, I welcomed the curiosity as it brought us closer to the folks hanging out in the park, opened up new conversations and more people to welcome us with smiles on our next walk.

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Beginning of his Journey

Caelen was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) on 13 Jan 2014, at age 10 months.

SMA is caused by a missing or abnormal (mutated) gene known as survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein in the body called survival motor neuron (SMN) protein. In a person with mutated genes, this protein is absent or significantly decreased, and causes severe problems for motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibres to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, nerve cells may shrink and eventually die without this protein, resulting in muscle weakness.

The hallmark feature of SMA Type I is that children are unable to sit or stand without help. They will require equipment such as strollers or wheelchairs for mobility. Swallowing and feeding will become difficult for children with this type of SMA and they will eventually lose the ability to swallow safely without aspirating. Children may eventually require a feeding tube to supplement their nutrition which permits the administration of liquid food into their stomachs.

Children with SMA Type 1 will also experience weakness of the muscles used for breathing, those that help expand the chest and fill the lungs with air. The chest is smaller than usual in these children and they begin to breathe using primarily their stomach muscles (belly breathing). The lungs do not fully develop due to this type of breathing, and coughing becomes very weak. It may be difficult for children to get enough air into their lungs while sleeping, and eventually throughout the day. Many of these children will require equipment to help them breathe; again this is based on what each family chooses. Weakness also leads to problems with the spine (scoliosis) and hips (displacement) that may lead to further loss of ability/function.

Source: Families of SMA