Millie-May and her family
Millie-May is always laughing, really nosey and a real hit with everyone.
Emma and Dave – Mum and Dad – describe her as a real treasure and Ruby her nine year old sister, loves her to pieces.
But life for the four year old has been a round of doctors, hospital, surgery and struggle.
Hospital appointments are a regular routine
Millie-May’s life has been dominated by illness and challenge; born with the rare Costello Syndrome in 2003 – an estimated 300 cases of this debilitating syndrome worldwide – she has heart and kidney complications and has had a cardiac and respiratory arrest.
She cannot feed orally; fully support her head, roll over, crawl or walk. She lives with constant breathing difficulties, which means sleep being supported by a ventilator every night. Still with the risk of tumours developing until aged 8, hospital appointments are a regular routine.
Millie-May and her family from Redhill, were first introduced by their health visitor to CHASE when Millie-May was not yet a year old, when they were going through some of the most testing times.
They now get invaluable and incredible support both at Christopher’s and at home, without which life would have been much worse.
Full time care
Emma, having previously worked in publishing is now Millie-May's full time carer. Ensuring Millie-May is packed up for school everyday, there are a million things to think about, plan for and communicate to others.
Emma Says: “I have to watch and entertain Millie-May all the time when she is here as well as providing for 100% of her needs.
Despite all these challenges she has enriched our lives hugely. However, we really appreciate the support CHASE gives us as a family.”
