Caelen's Quest: Bidding Farewell

28 September 2016

Bidding Farewell

Clicking on my older blog posts and recalling the first time we joined Starpals, it was hard to believe that two years had gone by. C was then a reserved boy, unfond and wary of strangers.

Today I looked at him totally changed all thanks to the group of nurses, volunteers and counsellors who dedicated their time to share, love and care for their patients. I watched C opened up his world; becoming a bubbly, chatty and warm-hearted child he is now and couldn't help but be moved by this beautiful transformation.

Last week, we were officially discharged by Starpals. It was sad to bid farewell yet a good sign that C was doing well, good enough to be on his own again.

We celebrated his discharge with cake, photos, hugs and laughters. This marked the end of our journey with Starpals and the start of a new chapter.

"We don't meet people by accident. They are meant to cross our path for a reason. Either you need them to change your life or you are the one that will change theirs."

I believed it worked both ways. Lives entwined and changed for the better.

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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