Caelen's Quest: Newspaper Article II

19 November 2014

Newspaper Article II

I have received numerous friend requests on Facebook and Google+ as well as emails from the public giving us words of encouragement, well wishes and offers to help in many ways. For that, I would like to say a big 'THANK YOU' to everyone. I have, in fact, replied to many as promptly as I should. I am also aware that some (you know who you are) are still waiting for follow-ups from my end but I haven't, my most sincere apologies.

This week has been hectic as we are in the midst of packing and preparing C's first trip out of Singapore. We will be joining Club Rainbow for a family retreat and will be cruising on Royal Caribbean - Mariner of the Seas. To prep for the trip, I have taken C to the clinic for his flu jab. He is crankier than before due to the jab and teething (again.. this time upper molar) but otherwise his general health seemed to be good for the trip. I, on the other hand, am busy packing for the entire family and IT IS a logistical nightmare. Toys, machines, consumables, medication, bathing chair, luggage for adults, luggage for children, double stroller... the list seemed to go on argh!!! It takes much careful planning to fit everything in the least number of luggage. So please do bear with me, I promise I will revert soon when we returned.

Meanwhile we have done an interview with The New Paper and here is our story featured on 19 Nov 2014. Click to enlarge.

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2 comments:

Unknown19 November 2014 at 21:57
Happy cruising & hv a wonderful family time together! :)
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Lowell19 November 2014 at 23:02
Thanks Lynda! And yes I got your email :)
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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