After a week of being in intensive care Harry was diagnosed with a condition that only 19 children worldwide has been diagnosed with. Sadly this condition is life limiting/threatening, this involves a short life span where the children do not make adulthood.
The condition also involves severe development delay and an abnormal bell shaped chest
Harry spent the first 7 months of his life in intensive care, in numerous hospitals in London and Kent. Harry underwent blood transfusions, phototherapy, MRI scans, theatre trips where Harry caught lots of infections including pneumonia . The doctors put Harrys parents through end of life counselling due to his condition they thought he would not survive and even if he did they said that he would have no quality of life.
Harry is now 3 years old and has lived out expectations from the professionals. Harry relies fully dependant on his mum and dad. Physio and occupational therapy is needed weekly still and speech and language and dietician too.
Harry has never been able to eat oral in which he has a Gastostromy(feeding tube inside his stomach) Harry is oxygen dependant 24/7 with the added need of CPAP at night times. Harry also has kyphoscolliosis, reflux, sleep apnea and delays in all areas. Harry cannot walk or talk and relies heavily on support.
We are raising funds for vital equipment for Harry,
special need equipment.
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