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The Sick Children’s Trust supported us when we felt completely lost and helpless.

News   •   Feb 07, 2017 10:00 GMT

Oscar just before his had his first seizure

We’ve nearly hit our £1,000 fundraising target through ‘Oscar’s Journey’ for The Sick Children’s Trust to say thank you for the support the charity gave us when we felt completely lost and helpless. At a time we thought our son was enduring his last days.

Up until 17 months old, Oscar was healthy, happy and always laughing away. But one day, when his Dad Kyle pulled up from work I took Oscar in his pram to meet him. We walked up the garden back to the house when we experienced a living nightmare.

Oscar was being his usual chatty self when all of a sudden he went quiet. We stopped walking to check on him. And the sight still haunts me. Oscar’s eyes had rolled back into his head, he had stopped breathing and he was lifeless.

I grabbed him and ran into the house shouting to my mum for help. I rang the ambulance while I carried him in my arms, but by the time I’d reached the stairs he’d started breathing again. For a split second I thanked my lucky stars. But then his body started to convulse.

Within ten minutes the first responder had arrived. They tried to stabilise him with diazepam and oxygen, but it wasn’t working. I watched desperately as they tried to help him. The ambulance soon arrived and rushed him straight to hospital to resus where 20 people crowded over him. All we could do was stand back and look on as they worked tirelessly for four hours to save his life. We thought our beautiful son was going to die.

The team urgently pumped him with medication and tried to help him breathe as the seizure continued. It seemed like it would never stop. Hundreds of questions were being thrown at us... but all we wanted to know was whether our little boy going to survive.

A moment passed and there was a brief sigh of relief, Oscar stopped convulsing… but a few seconds later he started again and his respiratory system had shut down. We were told that if the team didn’t sedate him, there was nothing else they could do.

Oscar was put on life-support and needed transferring to a paediatric intensive care unit (PICU) for specialist treatment. Phone calls were being made to Addenbrooke’s Hospital in Cambridge and Great Ormond Street Hospital in London to find a bed for our son so he could get the help he needed. Our local hospital, James Paget University Hospital in Great Yarmouth, only had an intensive care unit for adults.

The next 24 hours were torture. Alarms beeped constantly and the noise from the ventilator that was keeping our boy alive drummed away in our ears. We had no sleep; we were just staring at our son’s lifeless body wishing we could take his place. Finally we got the call to say that Oscar would be going to Addenbrooke’s Hospital. We were relieved, but also terrified. That night, Kyle went with Oscar to the hospital while I made the two hour journey separately.

When I arrived I raced to PICU and was sent to the family room where I met Kyle while they transferred our son onto the ward. It felt like a lifetime before we were allowed to see him again.

We were miles away from home and we knew that our son could be in hospital for the long haul. We feared he would not pull through and we were so scared of being separated from him when he needed us the most. Thankfully we didn’t have to leave his side as The Sick Children’s Trust supported us for the whole time he was in Cambridge.

We stayed at Acorn House, a ‘Home from Home’ run by The Sick Children’s Trust. It was a lifeline. Without it we’d have had to spend so much money on a hotel and most importantly, we wouldn’t have been able to be at our son’s hospital bedside within minutes of waking up every morning.

For six days Oscar was on life support in PICU where he had numerous tests and battled against pneumonia and enterovirus. The team tried to take him off life-support on the third day but he couldn’t cope. His airways closed and the arrest button was pressed within seconds. So many people came running through the doors to save our child's life once more.

During this time when it was touch and go, being able to go back to Acorn House to have a home-cooked meal, switch off for a few hours and sleep was indescribable. When your son is so unstable, but you desperately need food and rest to remain strong, it’s essential to know that the ward can get in touch directly by calling the phone in our room. And knowing that we could be by his bedside in just minutes made all the difference.

The charity’s ‘Homes from Homes’ mean you can stay strong for your little one, because you are taking care of yourself too.

Three days later, Oscar had improved and this time he was successfully taken off the ventilator and moved to the high dependency unit (HDU). To us, he looked no different; he still looked lifeless and fragile.

It took a long time for Oscar to recover from the sedation, but eventually he started to move, smile and giggle. My heart broke all over again, but this time for a good reason. Over the next few days he continued to have seizures but these were nothing compared to his first.

After ten days at Addenbrooke’s Hospital, we were discharged back to James Paget University Hospital and then we finally made it home. Oscar is not out of the woods yet though. Thankfully, he can now walk but since being home has had three seizures and is now battling tonsillitis due to having so many toxins in his body, and not being able to recuperate because of his medication. But he is a fighter and hasn't given up! He is stronger than anyone I know.

Since being home and fundraising I have met so many people who have never heard of The Sick Children’s Trust. Every time I get asked what the charity is, I tell them it’s a lifeline, a support and a ‘Home from Home’. Without The Sick Children’s Trust we wouldn’t’ve got through such a traumatic time when we genuinely thought our little boy was slipping through our fingers. Now we are so determined to fundraise to help other families who may be going through a similar experience.

We’ve already done a ‘Pram Walk’, have organised a charity gig and will be getting involved in the charity’s Big Chocolate Tea fundraising event in April. We have lots more on the horizon and it’s all to simply say thank you to The Sick Children’s Trust for enabling us to be by our son’s bedside when he needed us the most.

Georgia and Kyle,

Oscar’s parents

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