Shai is 8 years old and despite having very serious and life threatening conditions she is always smiling. After everything she has been through in her life, she continues to inspire all that know her. Her bravery and courage put many to shame. Her kindness and sense of humour steals the hearts of everyone she meets. Her smile truly captivates your heart.
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 has several other conditions, Oesophageal Dismotility, Delayed Gastric Emptying, Laryngomalacia, Joints that swell and become pain which leaves her sometimes dependant on her wheelchair or unable to write down her schoolwork. Last year Shai was also diagnosed with Premature Adrenarche which for a little girl of 7 is awful to have to deal with. Most teenagers struggle with the changes of their body but at 7 they are unable to understand what is happening. In September 2016 Shai developed an infection in her PEG that refused to go and after a 16 month battle to fight the infection her PEG had to be taken out. An NJ tube was put in for a 6-week period to give the site chance to heal and the infection to go. In February 2018 Shai will have further surgery to resite her new Piggy. She has missed over 15 weeks off of school in less than 18months.
Simple pleasures like swimming are a danger to Shai’s life in case she swallows any water and it enters into her lungs. Going to a show where they have use dry ice results in Shai having breathing problems and family holidays and days out have been cancelled at short notice because Shai’s health has deteriorated or she need’s urgent medical attention. Shai has spent so much time in hospital away from her brothers, sisters and school friends.
Little things we take for granted like being able to have a drink on a hot day or having a cold glass of water to soothe a sore throat, going to the shops for some sweets or having pizza with your friends, eating Easter Eggs or popcorn at the cinema, being able to run around for hours and hours and not end up crying in pain. Even cleaning her teeth has to be carried out with caution. These are the things that Shai cannot do but she doesn’t let it hold her back.