Caelen's Quest: Family Day

20 January 2014

Family Day

On my blog, you would find a wish list - things we wanted to do with Caelen and our hopes for the future. We made the effort on Sunday to fulfil one; took the children kite-flying on the field next to our house. The weather was fine and breezy. 'Jie Jie' (aka big sister) Cayla was ecstatic and couldn't hide her excitement. Caelen on the other hand was a little fussy about the heat but kept interested nonetheless by the burst of activities around him. This was our first kite-flying attempt, although there were glitches along the way, we managed. Might just consider doing it again when the children are up to it :)

"True courage is like a kite; a contrary wind raises it higher" - John Petit Senn

True courage is like a kite; a contrary wind raises it higher.
Read more at http://www.brainyquote.com/quotes/authors/j/john_petitsenn.html#7vq6A1B6msXDrCZr.99

Cayla is 2.5 years old now. As you can see, she's a bubbly, mischievous little girl, constantly up to something whereas Caelen is the gentle, sweet little boy who never fail to melt anyone's heart with his charming smile and personality. We kept their age gap close so they could grow up as playmates.

As far as Cayla is concerned, she is too young to understand the grave condition he is in. She naively believes that a trip to the doctor will make her brother well again. If only... wouldn't that be great? It is heart-wrenching to know that Caelen will never, in his lifetime, walk on his feet nor chase after 'Jie Jie'. It breaks my heart further to know that my child is forever stuck in a broken body. When it comes a time to make difficult, life-changing decisions... how would I decide for my child then? To let him go or to make him stay... how will I ever know his pains if he is never going to speak to me, if he is never able to show his emotions on his face?

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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