29 October 2018 – We designed and facilitated a team bonding activity for MOE PSB where they produced 11 handmade bears as Christmas presents for the children with rare disorders from Rare Disorders Society of Singapore – RDSS (www.rdss.org.sg). RDSS is our charity partner where we provide clinical art therapy to their beneficiaries.
For the MOE PSB Teddy Bear Christmas Project 2018, there were 88 participants who worked together as a team, and even collaborated (instead of competing) with other teams to get these bears ready within 2 hours! These bears were made from scratch, each bear came with a personalized message and/or story from each of the groups. This was such a meaningful event for everybody involved. We believe in building relationships through art and using art to do good and this was the event that checked all those boxes!
Here are the children and their bears!
Chloe Mah aged 9 likes her handmade bear Ally! Chloe is one of the children from RDSS (www.rdss.org.sg) and has glycogen storage disease called Pompe disease. It is an autosomal recessive metabolic disorder that damages muscle and nerve cells throughout the body it is caused by an accumulation of glycogen in the lysosome due to deficiency of enzymes, which requires regular expensive enzyme infusions. More information on Chloe can be found on www.savechloe.com
Hazel Tan aged 7 was very happy to receive her handmade bear! She gave us a friendly and warm greeting when we delivered her bear to her! She is one of the beneficiaries from RDSS (www.rdss.org.sg) and has West Syndrome. West syndrome is a severe epilepsy which causes severe mental disabilities. The incidence is estimated between 1-1.6 in 100,000 live births.
Ean Tan Juet Yang smiling as he poses with his bear! He is one of the beneficiaries from RDSS (www.rdss.org.sg) and has West Syndrome. West syndrome is a severe epilepsy which causes severe mental disabilities. The incidence is estimated between 1-1.6 in 100,000 live births.
Zachary Wong just turned one and has slipped into unconsciousness. One of the only cases in the rare condition of Leigh syndrome. Leigh syndrome is a severe neurological disorder which is the regressive loss of mental and movement abilities and typically results in death within 2-3 years, usually due to respiratory failure. It affects 1 in 40,000 people. We hope the bear will act as a beacon and love and support from all of us to Zachery’s family as they go through these difficult times.
See from Mark Chew‘s expression, you can see how happy he is with his bear! Mark is one the of children from RDSS (www.rdss.org.sg) and suffers from yolk sac tumor with hydrocephalus, which is a rare and aggressive germ cell tumor. Rare malignant tumor of cells line the yolk sac of the embryo, which normally becomes ovaries or testies, but it can also occur in areas like the brain and chest. It is often found in children ages 1-12 and affects 5.3 in 1,000,000.
Christopher Toi happily carries his handmade bear around the house! Christopher is one of the children from RDSS (www.rdss.org.sg) and has a condition called bile acid synthesis disorder. This is a rare group of inherited genetic disorders caused by defects in the enzymes that make bile acids. The mutation leads to a build-up of abnormal bile acids which becomes toxic to the body and can cause liver organ failure. It affects 5 in 1,000,000.
Issac Tan aged 7, one of our favourite children from RDSS (www.rdss.org.sg) has one of the biggest smiles and exturberates happiness! Issac has a condition called Rubinstein-Taybi syndrome which is known as broad thumb-hallux syndrome. The condition results in shirt stature, moderate to severe learning difficulties, distinctive facial features and broad thumbs and toes. It affects 1 in 100,000-125,000.
Zercia Chew aged 10 really really loves her bear! Using arts and crafts, she has made a bed and a dining set for her bear named “kate”. Zercia is one of the children from RDSS (www.rdss.org.sg) and has gaucher disease. The disorder results from a deficiency of enzymes. Some symptoms include anemia, fatigue, easy bruising, bleeding that is difficult to stop, enlarged spleen and liver. Gauche disease affects 1 in 100,000 persons.
Sarah Swee is hugging her handmade bear! She is one of the beneficiaries from RDSS (www.rdss.org.sg) and her condition is so rare that it has not been diagnosed. We categorise such patients as an unknown disorder.
Amelia Ng aged 11 received her handmade bear in the hospital where she has been recovering over the weeks. Her resilient spirit never ceases to amaze us. Amelia is one of the beneficiaries from RDSS (www.rdss.org.sg) and has Mitochrondial disorder which is a long term genetic chronic inherited disease. It occurs when mitochondria of the cell fail to produce energy for cell or body function. It is estimated to affect 1 in 6000.
Chloe Chek aged 4 is loving her bear handmade by the volunteers! She had one of the brightest smiles when she received her bear named “chocolate”. Chloe is one of the beneficiaries from RDSS (www.rdss.org.sg) and has Spinal Muscular Atrophy Type 2 (SMA II), which is an inherited genetic neuromuscular disorder which affects the nerve cells that control voluntary muscles. People with SMA II have poor muscles and are not able to sit or stand on their own. 1 in 6000 babies born are affected and 1 in 40 people are genetic carriers.