Curtis’ Story

Curtis was diagnosed with Charge Syndrome shortly after he was born.

Over the past 10 years, Curtis has had many operations (over 30) including several open heart operations, cleft lip and palate surgery, a cochlear implant, gastrostomy and his saliva glands removed.

In June 2016 Curtis had planned heart surgery (Fontan’s Completion) at Bristol Children’s Hospital.  Curtis had an extremely difficult recovery – he went into liver and kidney failure and needed his chest opened up again. He was in kidney failure for 5 weeks and his lungs kept collapsing. He was then given a tracheostomy and put on a Nippy ventilator to help with the Fontan operation. Curtis also developed a blood clot which led to an infection and sepsis.

Curtis spent 3 months in ITU at Bristol and he was then transferred back to HDU at Treliske Hospital, Truro. He spent a further 2 months in Treliske where his lungs continued to collapse. Curtis was finally discharged home on 13th November with a care package in place, but unfortunately was taken back into hospital after a week. Curtis is out of hospital again now and has just celebrated his 10th birthday at home with his family.

Support from WellChild

WellChild Nurse

Louise, Curtis’ mum, met WellChild Nurse Michelle when she was in a previous role. Michelle became the family’s WellChild Nurse, and when they were in ITU in Bristol, Michelle rang Louise regularly and she was the first person they saw when Curtis was transferred back to Treliske. WellChild Nurse Michelle has sorted Curtis’s care package, trained carers, has liaised with various teams (Respiratory and Cardiac teams), organised deliveries for their home, arranged for them to spend a week at the hospice and has communicated with everyone.

The support of our WellChild nurse has been a real game changer. She visits every day and sorts everything from medical supplies to home adaptions, communicating with the many professionals involved as well as being, quite literally, a shoulder to cry on. We would be so lost without her. Thanks WellChild

Curtis’ mum

WellChild Helping Hands Garden Makeover

Curtis and his family received a Helping Hands garden makeover project in March 2017. It has already made such a massive difference to the family. See Curtis’ garden makeover here >> 

On days when we can't go out we can now get out of the house, get some fresh air, and Curtis and Oscar can play together as siblings should. Curtis loves it, it is such a happy and inviting space.

Curtis' mum

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