Caelen's Quest: A New Year, A Different Light

5 February 2014

A New Year, A Different Light

Year of the Horse has been good so far.

The Good:

The annoying flu which bugged the family went away after stringent measures taken.
Caelen has included "papa" and "mama" in his world of babbling.
He recognises his favourite songs. Will laugh and clap along when these are played.
He discovered the wonders of bubbles and tries poking them with his fingers during tub time.

The Bad:

His phlegm is building up and been coughing more after his milk feed.
He sweats profusely when sitting up during playtime.
He drools more.

While Caelen gets to spend his first Lunar New Year with family and relatives. I, on the other hand, gained precious bonding time. This is the first time I looked at him and at things in a different light. And I came to learn that:

He whom I turned away from never left me.
He who fills my life with sadness and misery for many different reasons also fills my life with so much joy and love.
He gave little signs and subtle hints along the way to help me comprehend that things happen for a reason. Some are destined to be and we just need to go with the flow.
He made me see the silver lining when I am at my lowest. He let friends and sometimes strangers into my life at different juncture when I most needed help and support.
I can't ask for a miracle if I don't believe in Him.

This boy is our little angel. Sent to us with a purpose. Here to accomplish greater things. There are more to life than money and career. Please do not lose sight of what is important in life. You cannot backtrack and make up for lost time. Caelen has changed my life completely and I hope he can change others' too.

Tomorrow is an important day. We will be meeting some new friends from RDSS to understand how families cope with SMA. It's our first baby step forward! It will be a fruitful meet. Can't wait.

P.S. I would like to express my heartfelt thanks to friends and anonymous kind souls who contributed to Caelen's CDA. Thank you and God bless.

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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