Told he wouldn’t live beyond Three
Suzy Green, 47, was facing heartbreak until something incredible happened
We sat across the desk from the doctor, my husband Jerry as nervous as me. Our son, Mitchell, two, had been taken ill and the hospital had been running tests. Now here we were for the results. But nothing could have prepared us for the shock that followed.
‘I’m so sorry – your son’s vital organs are shutting down,’ the consultant said. ‘I’m afraid he won’t live to see his third birthday.’
It was as if all the air was sucked from the room. I sat there, numb. Please, no… Mitchell was our only child, a bright, beautiful, full-oflife toddler. He’d been born four weeks early weighing just 4lb 7oz, but he’d soon put on weight and become this cuddly little boy.
The first sign of anything wrong came eight weeks earlier, in October 2008. He’d been off his food and had developed a cough. Doctors thought he had a chest infection and gave him antibiotics. Only nothing had improved. Then his stomach and face had swollen up. Finally, he’d been given a scan and now here we were facing this devastating news. The doctor said Mitchell would be transferred to Great Ormond Street Hospital in London. Jerry and I watched as our little son was wired up to machines to keep him alive. How could this be happening?
Then, four weeks later, a student registrar said he’d seen similar symptoms in a child diagnosed with Barth Syndrome. I had to look it up on one of the hospital computers. It was a genetic disorder that only affected boys and caused a weakness in the heart and other muscles. But then I read the most horrifying bit… there was no known cure.
A special day
Jerry and I were devastated, but were told it could take months to get the diagnosis confirmed. In the meantime Mitchell was given medication to boost his white blood cells and tablets to strengthen his muscles. And to everyone’s surprise, he began to improve.
In December 2008, he was discharged. We were so thrilled and, as he grew stronger, we planned Mitchell’s third birthday – the one doctors said he wouldn’t live to see. On that special day in April, we threw a small party and Mitchell had lots of cake. Incredibly, he’d defied the odds.
Then three months later Mitchell’s test results came back. Doctors had sent them to five different countries to be analysed as the condition was so rare, but they’d all agreed – Mitchell had Barth Syndrome.
Less than 200 boys in the world had the condition so there was little information. All we could do was live each day the best we could.
Slowly, weeks passed, then months. Incredibly Mitchell reached his fourth birthday and then his fifth and even started school. It was so
‘Therewas no known cure’
special, seeing him in his uniform. ‘Mummy’s so proud of you,’ I said, kissing him.
Mitchell needed regular treatment and physiotherapy, but each year we marked his birthday with an even bigger party than the one before.
Now my incredible boy is 10. He loves swimming and is learning to ride a bike. He’s the only child in the world with this form of Barth Syndrome, but we live in hope there will be a medical breakthrough. It’s why Jerry and I support fund-raising events like Jeans for Genes Day. Genetic disorders are terrifying, but Mitchell’s proved that sometimes miracles can happen.