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"His teacher told him that if he got a cut, he'd let him bleed to death": I lost my children to hemophilia B

I was constantly waiting for the phone to ring with bad news.

Eunice, 69, from Geelong, VIC shares her heartbreaking story

I gently stroked his forehead as he lay on the hospital bed.
"Mummy's here," I soothed.
Our 11-week-old son, Ricky, was being circumcised but halfway through the procedure, something had gone wrong and he'd started bleeding profusely. A nurse quickly ushered
my husband, Patrick, and I out of the room.
"What's happening?" I panicked.
Everything was a blur until a doctor came out looking grim.
"I'm sorry, Ricky didn't make it," he said.
No, he can't be… We'd brought him in for a standard procedure and now suddenly he was dead? When we saw his tiny body, it was like he was sleeping.
I couldn't process that he'd never wake up.
The gene is usually carried through the mum, so I was riddled with guilt knowing it was this that had killed Ricky.
Afterwards, tests showed that Ricky had suffered from a blood condition, but doctors weren't sure exactly what.
I spent the next year in a haze of grief. When we welcomed another son, Gerard, into the world, he was the light in our darkness.
But as he started wriggling around and gently bumping into things, dark, angry bruises would swell up on his skin and he'd scream in agony.
Our doctor suspected he had the same condition as Ricky, but they had no idea how to treat it. We were told to just keep an eye on him. Patrick and I were absolutely petrified.
When he started crawling, his limbs would stiffen up and his knee and elbow joints became swollen. I watched him like a hawk, making sure he didn't hurt himself, but he seemed in incredible pain.
When he was three, I demanded answers. Finally which meant his body didn't produce the protein that clots blood. It caused internal bleeding and swelling. There wasn't a cure.
The gene is usually carried through the mum, so I was riddled with guilt knowing it was this that had killed Ricky.
"It's not your fault," Patrick said, hugging me.
We ended up in the emergency department at least once a week.
Over the next few years we welcomed a little girl, Joanne, and another son, Mark. Because haemophilia B mainly affects men, Mark had the condition too. It was devastating watching him go through the same pain as Gerard as he grew.
Sometimes strangers would glare at us when they noticed the bruises on the boys. One day, a policewoman turned up with our GP.
"We've received a report from someone concerned for your children's welfare," the officer said.
Thankfully, our doctor had explained their condition, so the visit was just a formality, but it was still alarming.
Protecting the boys became more difficult the older they got.
One day, they took off on their pushbikes. Both of them accidentally clipped the back of a car's trailer and were sent flying. There was so much blood everywhere and an ambulance rushed them to hospital. They nearly died. We ended up in the emergency department at least once a week after that.
When Gerard started high school, it was around the time when HIV was a big issue. His teacher told him that if he got a cut, he'd let him bleed to death instead of helping him because he was worried about contracting HIV. Gerard came home in tears.
"How dare he!" I raged when he told me, storming straight up to the principal's office to complain.
One evening, just before Gerard's 17th birthday, he stayed back at school for an arts exhibition.
We got a call saying he'd been taken to sick bay with a bad headache. Patrick and I rushed over to find him unconscious. Realising an ambulance would take too long, we raced him to hospital ourselves.
"Hang in there, sweetie," I told him. "I love you."
A doctor ran over and started CPR but eventually he stopped, looking deflated.
"I'm sorry," he said gravely.
I collapsed in tears. I'd lost another son to this horrific illness.
My eyes welled up. Finally, we had hope.
By now, Mark was nine and understood his big brother had died from the condition he also had. I was paranoid something would happen to him, too.
"I'm fine, Mum!" he'd sigh when I fussed over him.
Before I knew it, he'd moved out, got married and had two daughters.
No longer being able to keep an eye on him, I was constantly waiting for the phone to ring with bad news.
But one day, Mark phoned me with cheer in his voice. He explained he'd been selected to take part in a new trial for haemophilia B patients.
"If it works, I won't have any more bleeds," he said.
My eyes welled up. Finally, we had hope.
A month after the trial, it had already started to work. He'd had a few cuts on his hands from his job as a mechanic and they'd stopped bleeding on their own. The swelling in his joints stopped, too.
I collapsed in Patrick's arms, crying tears of joy. It's still early days, but doctors are pleased with the results. Now I can sleep at night and don't jump every time the phone rings.
I just wish this incredible medicine had been around sooner, before I'd lost my two boys.

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