Shai has been tube fed since 2012 and lovingly refers to her tube as Piggy. Shai has been unable to eat or drink because she has a Laryngeal Cleft, a rare congenital abnormality. The danger of food and liquid entering into her airway tube when she swallows is life threatening, it can cause her airways to block, her to choke or develop aspirational pneumonia where the food and liquid have entered her lungs. She has to be connected to a machine for 17 hours a day to keep Shai hydrated.
Shai’s Smile was created because Shai herself wanted to say thank you, to give something back and to create a community so that children like her know they are not alone and that there is support for them and their families.
At Shai’s Smile our mission is to provide support for children and young adults with life-long illnesses.
We aim to achieve this by building a community of service users, to bring these families together at physical events and by creating a forum where these families can obtain the advice and support they so desperately need.
We also aim to give back to the numerous charities, local organisations and groups that offer exceptional support and help to seriously unwell children and teenagers, who live with life limiting, life threatening illnesses that affect their everyday lives, by providing support, raising awareness and to educate people about the organisations which are available to them by promoting their services on our website, via local leaflets and flyers, and in some cases by giving much needed funding. Shai herself has been fortunate enough to benefit from some of these charities, but there are many more children like her. Without the additional financial backing of charities like Shai’s Smile, these groups and organisations would not be able to support these children to the same level that they so desperately need. We aim to help finance research organisations who work every day to try and find cures and solutions to some of the problems that very sick children face as well as support the families and siblings of these children.
