Caelen's Quest: All I Want For Christmas

5 November 2014

All I Want For Christmas

As C gets older, he is more aware of things around him. He is constantly drawn by new objects and demands to check them out to satisfy his curiosity. His mind needs stimulation and he is hungry for new knowledge and skills.

Problem is, his physical disability is a hindrance to his exploration. He requires help retrieving objects, he needs support when sitting, he needs to be carried around in order to explore, he needs someone to hold big heavy objects for him etc etc etc. Simply put, C needs me to be there for him, to act as his hands and legs. As much as I can help, I cannot dedicate all my time to him. There is a limitation to my physical capabilities as well.

Therefore, we are hoping to raise funds for a special tomato chair to meet his needs.

Check out the campaign below for more details.

2 comments:

olivia liem5 November 2014 at 10:54
Hi Lowell, I know you and Caelen from Nallur. My heart is aching everytime I see Caelen's cute and happy face. I can only help a little, but I sincerely hope that Caelen can get his chair soon and be able to do more things. My prayers are with you. God bless you!
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Lowell5 November 2014 at 17:02
Hi Olivia, thank you for helping! there is no amount too small and a little goes a long way. Please continue to company us on this journey. I hope he continue to bring more smiles to all too.
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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