Caelen's Quest: How You Can Help

Caelen sees a group of doctors including physio/occupational/speech therapists, dietician, neurologist, orthopaedic, genetic and respiratory specialists. He needs expensive therapies, medical care and equipment to lead a full functional life.

Status - Item - Cost Estimation
Purchased - Convaid Rodeo - $5,283.00 (Part funded by SG Enabled)
Purchased - External Battery Philips Respironics Cough Assist E70 - $550.00
Purchased - Knee Gaitor - $88.00
Purchased - Custom Made Body Brace $1,060.00 (Funded by Medifund Jr)
Purchased - Custom Made AFO - $1,060.00 (Funded by Medifund Jr)
Purchased - DeVilbiss 7310 Portable Suction Machine - $1,500.00 (Funded by Medifund Jr)
Purchased - Panda Child Powered Chair - $4,710.00 (Funded by SG Enabled)
Purchased - Tristander w/ Activity Tray - $5,540.00 (Funded by SG Enabled)
Purchased - Mini Me Mask & Headgear (to upsize) - $400.00 (Sponsored by Ms Ng)
Purchased - Philips Respironics Cough Assist E70 - $6,527.00
Purchased - Vivo 40 BIPAP & Mini Me Mask - $6,500.00 (Sponsored by family & friends)
Purchased - Nellcor Table-Top Oximeter - $3,800.00
Purchased - Special Tomato Multi-Positioning Seat - $3,390.00 (Sponsored by Indiegogo funders)
Purchased - Nellcor Handheld Pulse Oximeter & Sensors - $2,000.00
Purchased - Kangaroo ePump Enteral Feeding Pump - $1,550.00 (Part sponsored by Mr Ho)
Purchased - Philips Everflo Oxygen Concentrator - $1,500.00
Purchased - JumpStart Kangaroo AFO - $440.00
Purchased - Oxygen Cylinder - $380.00
Purchased - Suction Machine - $300.00 to $600.00
Purchased - Humidifier - $250.00
Purchased - Omron Compressor Nebuliser - $121.65 (Sponsored by Mr & Mrs Chan)
Purchased - Resuscitator Kit - $100.00
Ongoing - School Fees - $490.00 monthly (for Kindergarten & AWWA)
Ongoing - Consumables & Medication - $300.00 monthly
Ongoing - Home Physiotherapy - $260.00 monthly
Ongoing - Utilities - $170.00 monthly
Ongoing - Outpatient Consultation - $100.00++ per visit (quarterly)

Price guide from http://www.paediatricss.com/ and http://www.rehabmart.com.sg/

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We are truly grateful for your kind donations and support.

To get in touch, email us at lowelltan@hotmail.com

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