Johnny Grimstone’s story Born: 8th January 2010
"Johnny Grimstone is a bright, beautiful little boy who has had more than his share of challenges.
He has had 2 open heart surgeries (4 days old and 2 years old) and 3 catheter procedures (2 just a month or so ago) in the short 4 years of his life.
He has epilepsy and a mild form a cerebral palsy in his four limbs but this doesn't stop this gorgeous little one doing as much as he can just like everyone else.
Johnny has started kindy part-time this year and is growing leaps and bounds. He is a sensitive child but once he's comfortable he comes out of his shell and his personality blossoms.
Unfortunately Johnny's heart story isn't finished yet, he will have to have ongoing heart surgeries to replace the conduit and valve in his little heart, how many we don't know at this stage but we are still hopeful technology will catch up and these will become less as he gets older. They are still trying to get his seizures under control with medication but Johnny is a constant reminder when you get knocked down you get up again and he does again and again.
He has amazing support from the Heart and Neurology units and has extra help from the wonderful ladies at the Child Development Team.
Johnny's fascination with European cars always amazes people as he can name everyone by sight just driving along in the car and he tells people he will be driving a yellow Lamborghini when he grows up.
Ironically Johnny has a gift at stealing hearts wherever he goes, so we will be ready to lock him up when he's 16!
Through the tough times over the years the most precious gift is our boy, life is so precious and he has taught all of us to take one day at a time and enjoy as much of it as you can.
A very special thank you to Heart Kids for their support over the years and to all the wonderful staff at Starship especially at ward 23B, because of your special work our boy continues his special journey."
Every day, Heart Kids NZ touches the lives of heart children and their families by providing them with practical, emotional and psychosocial services - be it an information brochure, specialist equipment, leadership development for heart youth and adults, a camping experience, an opportunity to connect with other families, a hot meal for hospital-bound families, or just a shoulder to cry on. Heart Kids NZ support is vital for those affected, helping them cope with the lifelong challenges of living with a childhood heart disease.
Their 18 affiliated branches are here to provide support services to heart children and families when they return home from hospital. These branches are run by volunteers, who are parents and caregivers of children with heart conditions. They have a good understanding of the journey you are travelling and are passionate about helping others with similar needs.
