Caelen's Quest: Caelen Is One!

3 March 2014

Caelen Is One!

Overnight Sleep Test at KKH

On 28 Feb, Caelen underwent a Sleep Test at KKH. This test is often conducted for patients with sleep apnea or related sleep disorders. However, in the case of SMA patients, it is used to identify their sleep patterns, access respiratory functions and to also understand how the changes in airflow and pressure aid their breathing while asleep.

In order to take detailed readings of the above mentioned, technician needed to wire him up to a few machines. Took us almost an hour and a half to complete this delicate task with Caelen screaming and crying the entire time (not a great experience). He continued to protest for the next hour that followed, leaving me emotionally and physically drained. But the night ended well with him knocked out, totally exhausted.

We celebrated Caelen's first birthday cum fundraising the Sunday that followed. It was the best celebration ever and fundraising was a success! All these not possible without the help from families, friends and lovely people.

Heartfelt thanks to:

Mr Rahul Sharma & Ms Beh Hui Shiang the venue sponsors (very lovely place) for this party
Ms Isabel Lee-Shorrock the resourceful planner who has helped in ways I could never thank her enough
Many friends who came and helped out with the logistics and setup
Families and friends who came for the birthday party
All kind donors and supporters for the fundraising program

Special thanks to kind sponsors:

Mr Case Woo & Ms Tammy Sim for designing the 'Thank You' cards
Mr Tan Jit Khoon - Winson Press Pte Ltd for printing the 'Thank You' cards
Mr Bernie Lee - A'zone Corporation Pte Ltd for the customised Sesame Street backdrop
Ms Rena Tan & Partner - Sugarena :: Candy Buffet Stylist for the candy table of Sesame Street treats
Pan Pacific Singapore for the Sasha's Bears
Ms Annabelle - One-Stop No. 1 Entertainment for the lovely Sesame Street balloon sculptures and face-painting session
Mr Joe Lim - Wow Let's Party for the helium balloons & Elmo balloon bouquet
Mr Eisen - Birthday Party SG for the fabulous entertainment
Ms Samantha - Hey, Cupcakes! for the pretty and delicious Cookie Monster cake
Ms Renae Lim - Say It With Sugar for personally baking and decorating the Sesame Street cookies
Ms Vivy Toha for the organic Nutrifresh soya milk sachets
Mr Alex Pua - BellyGood by Tung Lok Group for the professional service and logistics arrangement

Finally, hubby and I did our first live TV interview with Channel News Asia AM Live today, a special arrangement by Mr Kenneth Mah of RDSS. For those who missed the live telecast, this is the link to the video clip http://www1.channelnewsasia.com/amlive/2014/03/03/interviews-rare-diseases/

Raise awareness, bring about changes and new hopes for all rare diseases patients.

2 comments:

Yin May6 March 2014 at 12:41
Happy Birthday Caelen!
ReplyDelete
Replies
Lowell7 March 2014 at 09:37
Thank you Auntie May!
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