Rhys’ Story

Rhys was born prematurely in April 2014. At two weeks old Rhys stopped breathing and had to have emergency heart surgery. Despite this he continued to have episodes where he would stop breathing so in August that same year it was decided that he should have a tracheostomy which would give him support 24-hours a day.

Rhys has been diagnosed as having DiGeorge syndrome (22q11 deletion) and had to spend nine months in hospital where he was cared for after his major surgery. This was an extremely tough time for the family as they did not live locally to the hospital Rhys was in so had to spend hours travelling from home every day with his two year old sister just so as they could be with him.

Support from WellChild

Due to the families location both at hospital and at home they were able to gain the support of two WellChild Children’s Nurses. Sue Donald at the Evelina Hospital helped to organise Rhys’ care package so that he could return home when the time was right for him to leave. Two months before his first birthday the family were able to bring Rhys home. Liz Foster the East Sussex WellChild Nurse continued Sue’s work in planning and arranging the round the clock care that Rhys would need to keep him with his family at home.

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Liz coordinated our care package, fought arguments for us and supported us. Having one port of call made all our lives so much easier. Liz also had the contacts to get things moving for us. Rhys has been home three months and has started eating and standing. It’s fantastic.

Naomi, Rhys’ mum

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