Caelen's Quest: Make a Difference

14 September 2014

Make a Difference

As I laid myself to rest tonight, I had the sudden urge to scan through C's photos, reminisced what it was like to be pregnant with him, how chubby and big he was, how excited it was to watch him meet his milestones and then I wondered how it all came to this. It was unreal. Just 9 months ago he was a budding child and now everything about him seemed to back-track. It hurts bad, still is, I realized.

Looking back then and now, for the progress i have made, I thought I deserve a pat. I have done well for a newbie S(pecial) N(eeds) mom. I have been very open to others about my feelings, about my child's condition, to medical intervention etc. Why? Because I have always believed that my child is different. Being stuck with SMA, at 1.5yo, C has well surpassed other children with the same condition in so many ways. One thing for sure, he is still striving.

But just half a year ago, I held a different understanding to that. My idea of him being different is to not walk the same path others had. Not for C to be locked in a body he has no control over, to suffer this horrible disease indefinitely, a body a life held together by machine support (perhaps against his will). Afterall it wasn't easy watching and "losing" your child a little at a time until all his muscles get wasted. So I was undecided what my response would be when THE question comes - what do you want for your child?

Until 3 days ago...

We attended a consultation/assessment at a private paediatric physiotherapy centre. Our purpose was to assess C's current needs and to acquire a suitable AFO.

This was C trying out his AFO. We had the opportunity to make him stand upright to see how well his legs were holding his weight. In doing so, C was no doubt in distress but we could see that he was, at the same time, flexing his legs and trying to lock his knees. Therapist was very happy with his attempts and was hopeful that more could be done for him.

This is it! He could be different! From the bottom of my heart, I felt a glimpse of hope. Maybe he COULD hang on for a cure. Maybe he would not walk, maybe he would continue to get weak but if we start working on his muscles (whatever that is left) he could continue to roll left to right... I would be a very happy mom. Because that is all that I ask for... for C to continue smiling, talking, eating and moving.

1 comment:

Anonymous7 November 2014 at 17:14
Its not easy to go thru all this.. Jiayou mummy n little c. Little c dont b afraid u r not alone.. Ur family nvr gives up on u..
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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