I was first diagnosed when I was pregnant with my eldest son Harry who is now 15. I had been screened as a child because my sister and several cousins had the condition, but I had never showed any signs or symptoms.
Although at age 29 and 36 weeks pregnant at a routine checkup I was told I had hypertrophic cardiomyopathy. I guess then I didn’t understand too much about the condition.
When our youngest son George was born he had a few complications. He had two small holes in his heart and the thickness in his heart muscle.
George at this time had no signs or any symptoms of a heart condition. He was placed under a consultant from Leeds, and we were told to let him live a normal life, but the hospital would keep a very close eye on him.
When George was a year old and Harry 3 half, we decided to have both boys genetically tested for hypertrophic cardiomyopathy. Harry didn’t carry the gene but George did. That was a very tough day for myself and my husband Steve, as we had the great news about Harry, but in a flash it was taken away with the devastating news about George carrying the gene.
George was an extremely active little boy, he loved to play football and he was showing great potential as a centre midfielder. He even had place at the Hull city football academy.
On June 8th 2013 two days after 7th birthday at our yearly checkup, we were told the shocking news that Georges condition had developed into hypertrophic cardiomyopathy. The thickening that George had when he was born was now causing an obstruction in his left ventricle, this was making it hard for him to pump blood around his body.
This was the most devastating news our lives were turned upside down. George was told to stop playing football or any competitive sport, as he could no longer take part in strenuous exercise due to his condition. This wasn’t easy for a seven-year-old.
George was put on a lot of medication and referred to Great Ormond Street Hospital, as this condition is rare in children. George needed specialist care and monitoring which he would receive at Gosh.
We travelled from Hull in Yorkshire to Gosh and we would have travel to the ends of the Earth to get the care we received there. George underwent scans and lots of assessments for several months to see if he was a candidate the surgery.
In February 2015 when he was eight years old he had major open heart surgery called a myectomy, this was a six hour operation where they remove some of the thickened heart muscle. This was to try and make more room in his left ventricle in the hope as George grew his heart would remodel itself.
Georges operation was one of the worst times of our lives as parents seeing him like that and being so helpless we spent one week in hospital with George and then returned home.
He had seven weeks off school and then went back for a couple of hours a day after three months he returned back to school full-time it was just amazing how he bounce back.
Life has changed a lot for George he is now 12 and still can’t do what most boys his age can but has found his limitations well sometimes!
While he can no longer play football as a midfielder, George came up with the bright idea of playing in goal, as he still wanted to be involved with his Sunday league team. He has also found I love for golf winning his junior championship at his club this year.
George is still on lots of medication and the operation wasn’t a cure but it has made him a lot better, he’s still under the very close eye of Dr Kaski and his amazing team. We travel from Hull to London every six months and will continue to until George is in adult care. We don’t know what the future holds for George he may need more operations and he will always be on medication for the rest of his life.
George was recently in the TV documentary Paul O’Grady little heroes about what life is like living with her HCM and his time at Gosh. George has a great attitude to life we are very proud of him. He is a real inspiration. He has a moto he always tries to focus on what he can do and not what he can’t do, and he really hoped the program showed other children with this condition that.
After having a conversation with the lovely Shira, we really wanted to help and get involved with Max’s foundation to help raise awareness and future funds for research.
George is currently helping by donating blood and having scans as part of Dr Kaski research program, which we now know is now funded by Max’s foundation which is just incredible.
We want to help and be involved as much as we can.
Thank you for reading our story.💙x”