When Binky turns from caterpillar to butterfly, it’s a disaster! His wings won’t work and poor Binky can’t fly. Luckily, the spiders, silkworms and bees come to his aid. Together they work out how to give Binky a pair of bright, strong wings.
Binky’s story could be anyone’s story – a child who doesn’t fit in or feels an acute sense of otherness to the world around him. It’s a story about being different but it’s also about hope and strength, and what happens when a community comes together in love and purpose.
Whilst Binky’s Time to Fly is a beautiful metaphor that all children will enjoy and internalise, it’s also a story very real and very personal to author Sharmila Collins. Sharmila, a mum of four, has her own “butterfly child” – a name often given to children with Epidermolysis Bullosa (EB) because of their delicate skin.
Sharmila’s eldest daughter Sohana (now 17 years old) has been living with Recessive Dystrophic Epidermolysis Bullosa since since birth. EB is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile. In people with EB, any trauma or friction to the skin can cause tears and blisters. The condition, caused by faulty genes, is incredibly rare, affecting around one in every 17,000 children born in the UK. There are currently around 5,000 sufferers living with the disease.
Sohana was not allowed to crawl as a baby and she’s never ridden a bike or climbed a tree…because falling could be disastrous. She wears gloves all the time to protect her hands, which are at risk of webbing, and her entire body is bandaged before sleeping each night. Every minute of her day is an effort in keeping her skin safe. This is no easy life. Yet Sohana is resilient.
St Andrew’s Montessori had the privilege of being the chosen school for Sohana and her three sisters, and we remember the indomitable spirit of a little girl (now not so little) who faced so many challenges but with the support of her family, friends and community continues to rise above her difference with the heart of a hero.
Whilst Sohana’s body is extremely fragile, her fighting spirit is monumental. She is known for her sense of humour and her amazing ability to enjoy all the things that she is able to rather than focus on the things she can’t do. There is a lesson in this for all of us.
There is currently no cure for EB and up until recently, the amount of money spent on research was minimal. Sohana’s parents started raising money for research before setting up a charity (Cure EB) dedicated to finding treatments and eventually a cure. Gene therapy trials have since started thanks to growing support from friends, family and external supporters. Cure EB is also to fund imminent gene therapy trials in France, bringing hope to many families with EB.
Sohana, we thank you for the inspiration you are and for the privilege of having you as part of our little school. Love, St Andrew’s Montessori