Written by
Parents of Caelen Lam:
Lam Kam Choy (Mr)
Lowell Tan (Ms)
Caelen was born a healthy full term baby in March 2013. He was eating well and growing up like any normal child except that he was slightly slower in attaining his developmental milestones. We thought nothing of it initially, thinking that boys generally develop slower. Caelen met his first milestone of rolling over at five and a half months old and could lift his head and chest while lying on his tummy.
Things took a turn when he was six and a half months old. We noticed a lack of limb reflexes and he was still floppy at this juncture. Arms movements were limited and he was only comfortable reaching out within close proximity – usually less than an arm’s length away. His lack of leg movements became more significant and he made no attempt to kick, sit or crawl on his own. Sitting with assistance proved difficult, demonstrating a poor sense of balance and weak trunk control. Although Caelen was still growing up and developing, it was at a painfully slow pace. In fact, he was actually deteriorating over time.
In January 2014, Caelen was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. SMA is caused by a missing or abnormal (mutated) gene known as Survival Motor Neuron Gene 1 (SMN1). The absence of the SMN1 gene results in muscular weakness that affects one’s gross motor skills as well as one’s ability to feed and breathe. This condition is degenerative in nature and Caelen will gradually lose the muscular ability required to function; and become bedridden or dependent on a special wheel chair for mobility. He will also require interventions such as tube-feeding and respiratory support to keep him alive. The prognosis for SMA Type 1 patients is poor, with the majority not being able to live past the age of two due to the ever looming threat of respiratory insufficiency and other resulting complications.
Nonetheless, our hopes for Caelen to grow up well and healthy and to reach more milestones (perhaps not physically but cognitively and intellectually) remain the same. Caelen recently celebrated his first birthday. Now, at just 14 months old, he has shown us what he can be capable of by demonstrating a strong ability to communicate effectively to make up for his immobility.
Please help us realise his true potential.
Join us on his special journey at www.caelenquest.blogspot.com.
Lowell%20Tan%20(Ms)Caelen%20was%20born%20a%20healthy%20full%20term%20baby%20in%20March%202013.%20He%20was%20eating%20well%20and%20growing%20up%20like%20any%20normal%20child%20except%20that%20he%20was%20slightly%20slower%20in%20attaining%20his%20developmental%20milestones.%20We%20thought%20nothing%20of%20it%20initially,%20thinking%20that%20boys%20generally%20develop%20slower.%20Caelen%20met%20his%20first%20milestone%20of%20rolling%20over%20at%20five%20and%20a%20half%20months%20old%20and%20could%20lift%20his%20head%20and%20chest%20while%20lying%20on%20his%20tummy.Things%20took%20a%20turn%20when%20he%20was%20six%20and%20a%20half%20months%20old.%20We%20noticed%20a%20lack%20of%20limb%20reflexes%20and%20he%20was%20still%20floppy%20at%20this%20juncture.%20Arms%20movements%20were%20limited%20and%20he%20was%20only%20comfortable%20reaching%20out%20within%20close%20proximity%20-%20usually%20less%20than%20an%20arm’s%20length%20away.%20His%20lack%20of%20leg%20movements%20became%20more%20significant%20and%20he%20made%20no%20attempt%20to%20kick,%20sit%20or%20crawl%20on%20his%20own.%20Sitting%20with%20assistance%20proved%20difficult,%20demonstrating%20a%20poor%20sense%20of%20balance%20and%20weak%20trunk%20control.%20Although%20Caelen%20was%20still%20growing%20up%20and%20developing,%20it%20was%20at%20a%20painfully%20slow%20pace.%20In%20fact,%20he%20was%20actually%20deteriorating%20over%20time.In%20January%202014,%20Caelen%20was%20diagnosed%20with%20Spinal%20Muscular%20Atrophy%20(SMA)%20Type%201.%20SMA%20is%20caused%20by%20a%20missing%20or%20abnormal%20(mutated)%20gene%20known%20as%20Survival%20Motor%20Neuron%20Gene%201%20(SMN1).%20The%20absence%20of%20the%20SMN1%20gene%20results%20in%20muscular%20weakness%20that%20affects%20one’s%20gross%20motor%20skills%20as%20well%20as%20one’s%20ability%20to%20feed%20and%20breathe.%20This%20condition%20is%20degenerative%20in%20nature%20and%20Caelen%20will%20gradually%20lose%20the%20muscular%20ability%20required%20to%20function;%20and%20become%20bedridden%20or%20dependent%20on%20a%20special%20wheel%20chair%20for%20mobility.%20He%20will%20also%20require%20interventions%20such%20as%20tube-feeding%20and%20respiratory%20support%20to%20keep%20him%20alive.%20The%20prognosis%20for%20SMA%20Type%201%20patients%20is%20poor,%20with%20the%20majority%20not%20being%20able%20to%20live%20past%20the%20age%20of%20two%20due%20to%20the%20ever%20looming%20threat%20of%20respiratory%20insufficiency%20and%20other%20resulting%20complications.Nonetheless,%20our%20hopes%20for%20Caelen%20to%20grow%20up%20well%20and%20healthy%20and%20to%20reach%20more%20milestones%20(perhaps%20not%20physically%20but%20cognitively%20and%20intellectually)%20remain%20the%20same.%20Caelen%20recently%20celebrated%20his%20first%20birthday.%20Now,%20at%20just%2014%20months%20old,%20he%20has%20shown%20us%20what%20he%20can%20be%20capable%20of%20by%20demonstrating%20a%20strong%20ability%20to%20communicate%20effectively%20to%20make%20up%20for%20his%20immobility.Please%20help%20us%20realise%20his%20true%20potential.Join%20us%20on%20his%20special%20journey%20at%20a%20href=http://www.caelenquest.blogspot.comwww.caelenquest.blogspot.com/a. ){kind=link}