Caelen's Quest: Christmas Eve

24 December 2014

Christmas Eve

Yes! We have a chair for Christmas!! It arrived on 23 Dec, the best Christmas gift for C ever. Thank you all for making it possible.

Engrossed in his games on tablet

Little boy now spends a fair amount of time on his chair in the day for various activities e.g. drawing, playing games and toys, meals, reading etc.

See how it actually fits in our (very squeezy) room and love the fact that it's slim enough to maneuver to different parts of the house. If you also noticed, C's head is barely touching the headrest, leaving plenty of room for growth. This chair is definitely going to last us for quite a while.

This year instead of keeping to the usual stay-at-home Christmas, we have decided to throw a small party. Gone is the 1.8 metres tree. I reckoned that it's going to be more of hazard than pretty display. This has thus been replaced by a petite 1.2 metre neat looking one which complements the gingerbread house that I painstakingly painted over the last 2 weeks. Can't wait for the party tomorrow! Will definitely update with more details after the event.

Here's wishing all a blessed Christmas filled with love! Oh yes, C wishes everyone a Merry Christmas too!
(In case it doesn't load, you may view video at http://youtu.be/WwNkSky2Atc)

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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