Iolan was born with several heart defects. His surgery at just 2 1/2 years old was supposed to ‘fix’ all the defects and enable him to live as normal a life as possible.
Sadly it became clear a few days after the surgery that something was terribly wrong with him and after several tests and scans, it was discovered he had suffered a stroke. It wiped out the use of his left side, and weakened his right side. He couldn’t talk, walk or sit up unaided and was tube fed as he couldn’t eat or drink properly for a while.
A week later Iolan seemed to struggle with his breathing. He was rushed into emergency surgery and it was found the original surgery hadn’t gone to plan. The damage caused to his heart was irreparable, and it was unlikely that his heart would recover, even with medication.
We went home in a daze, my otherwise healthy child was suddenly very different. We had a few months of rehabilitation, and slowly Iolan was able to speak a few words and take a few steps. He had however lost the use of his left arm and hand and had a weakness throughout the left side. He was still tube fed, and required medication throughout the day and night.
After a couple of months at home Iolan was very different. His breathing was laboured, he was sick a lot and he could barely stay awake. He was suffering from severe heart failure, and his only chance of survival was a transplant.
We were transferred to a hospital 350miles from home, where we spent the next 5 months. Iolan had many surgeries to try to help him survive the wait for a new heart, including a tracheostomy and having an artificial heart (VAD) fitted, and suffered many setbacks including another stroke and being placed in an induced coma for a few weeks.
Thankfully, he received his heart and has made huge progress with his speech and mobility, though he uses a wheelchair when out and about. He is also able to eat and drink again.
He has just celebrated 12 years of his new heart, 4 more lifetimes that he would not have had if not for organ donation.
He is happy, funny, and an annoying teenager, all in equal measures, just as it should be!
Life now isn’t what it started out to be, but it’s still an amazing life to have.