Caelen's Quest: Magical Number Two

12 March 2015

Magical Number Two

"The life expectancy of patients with Spinal Muscular Atrophy (SMA) Type I is generally considered to be less than 2 years." This typical prognosis, may no longer stands true given the early medical intervention provided to patients. Nonetheless, it is a significant milestone for most parents.

And C celebrated his second birthday a week ago.

Unlike the first, this year's celebration was kept small. Brick.inthebrickyard was very kind to bake for us on this important day. The dessert table was a visual treat and pleasure for our taste buds. I absolutely love the simplicity, colours and presentation. Something really great about them is that they bake for party of any size (even a small one like ours!) at very reasonable price. Do check them out.

Post by Brick. inthebrickyard.

We were honoured to also have with us, Annabelle from One-Stop No.1 Entertainment, who again generously sponsored the balloon wall for this special occasion. Annabelle has been with us right from the beginning of C's journey and we are blessed for having friends like her who stood by us.

Actually there were two celebrations - on a weekend earlier and on the actual day. Fruit cake with fresh cream courtesy of my sister & family and an ice-cream chocolate cake from Starpals - nurse Serene & social worker Siang Ping. C was especially happy with his ice-cream cake, amused and delighted that the cake was cold to touch. Siang Ping further amazed C with the smoke-like fog produced by dry ice in water. Oh boy, kids went gaga over it.

From lighting and blowing the candles, birthday song to cake cutting, C was seen grinning coyly. Those were the special moments that melted our hearts. Looking forward to your next birthday little man.

For other videos I have uploaded recently:
C learning how to count
C singing enthusiatically

2 comments:

Kaven Kan3 April 2015 at 18:48
Happy Belated Birthday Caelen! Sorry for not being able to read about you lately as this aunty here just started to pursue her master in communication. We both will fight together ok? :)
ReplyDelete
Replies
Lowell21 April 2015 at 17:10
Thank you Kaven! No doubt we are fighting a different battle, but yes, we fight hard together :))
ReplyDelete
Replies

Add comment

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