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Ollie's story

Two-year-old Ollie has a rare liver condition caused by a missing gene

How your support enabled Julia's House to be there for Hannah and her family through heartbreak and happiness. 

Ollie is a very precious baby. When he was born I was so anxious. Deep down I had a niggling feeling that he was going to have the same condition as his big brother who had died at just four and a half years old.

My first child, Kieran, had a rare liver condition caused by a missing gene he had inherited from me and Mike. I was told that I had a one in four chance of any future babies having the same condition.

Ollie had a blood test and the results showed he had high ammonia levels - we knew immediately we were facing another battle but we felt strong. We had dealt with this once, we could do it again and because we knew what the matter was this time we could swing into action for Ollie.

After losing Kieran we really wanted another child but it was looking like it might never happen. I was in my 40s and had suffered several miscarriages - time was running out if I wanted to have another child. I knew trying for a baby was a huge gamble but after the help we’d received from Julia’s House I also knew that support was out there if we needed it.

 

Ollie had his blood tested by the genetics team who confirmed he had the missing gene in his liver and he was put straight on a low protein diet. Acting quickly saved him from the cerebral palsy and epilepsy that Kieran had suffered. Ollie came home from hospital only to be rushed back 10 days later because his ammonia levels were so unstable. I bumped into Karen from Julia’s House and she encouraged us to get some help - she could see that Mike and I were completely exhausted  from all the worry and being stuck in hospital.

Ollie was regularly in the high dependency unit on four drips and wired up to all sort of machines. Julia’s House arranged for us to have hospital sits - one of the care team would come and be with Ollie while we had a break. Even being able to leave his bedside to have a cup of tea or go out and get a breath of fresh air was such a relief. Few people realise that Julia’s House helps families even while their child is in hospital.

Ollie was born in September and by November the medical staff were already talking about a liver transplant. Just before Christmas that year he passed all the assessment tests and went on the transplant waiting list. He only needed half a liver because he was so small. We were told to pack a bag and be ready to dash to hospital at any time.

When the call finally came it was surreal. - it was 23rd August which would have been Kieran’s 10th birthday. Ollie and I were getting ready to go to a Julia’s House Housemates session but we had to abandon that, grab our bag and wait for the ambulance. It was so long since I had packed the bag that when we got to hospital I realised it was full of winter clothes - most of them long outgrown baby outfits!

All the nurses and carers at Julia’s House were so excited to hear that, instead of coming over to the hospice for a coffee, we were dashing off to London for Ollie’s liver transplant!

Just 11 days after the seven hour operation Ollie was back at home doing really well. Julia’s House was there to help us. We still had to be really careful because Ollie needed monitoring to make sure his body wasn’t rejecting the new liver. If his temperature went up we had to gauge whether just to give him Calpol or take him to hospital.

Having that experienced nursing support from Julia’s House was crucial because it gave us the confidence to leave him and take a break.

We chose 50:50 care - half in the hospice, half at home. This would give Ollie the chance to get out and have fun and be sociable with other children but then we would have the convenience of someone coming to the house occasionally in the evening so that Mike and I could sit down and enjoy a meal together, have some quality time with each other. This flexibility is really important when you have busy lives and medical demands. 

Ollie has been told all about Kieran. We want him to know about his big brother. We have a huge picture of Kieran on the wall at home which we touch and say ‘ I love you to the moon and back’  - what we always used to say to Kieran when he was alive.

We will never forget Kieran or the journey we went on trying to save him. Kieran had cerebral palsy and epilepsy, life-limiting conditions which meant he wasn't eligible for the liver transplant he so desperately needed. 

Kieran died on Valentine’s Day in 2011. He had spent six months in hospital.

Despite being really ill, Kieran loved going to the Julia’s House, so although he died hospital, it felt right that he should go back to the hospice, and stay in the Mermaid Room, so we could say our goodbyes before the funeral. 

It was so lovely to be able to bring him to this place of peace and happiness with no wires, no machines, no pumps, just lots of friendly faces. The nurses and carers had decorated the walls with pictures of Kieran and put on music he loved. They wrapped him in two big quilts, which we still have - Ollie plays on them now.

On the day of the funeral the Julia’s House staff helped us get Kieran ready, put him in his pyjamas with his favourite teddy - a monkey - a family photo and put a heart shaped stone in his pocket. When we set off for the funeral the staff all lined up outside to say their farewells and release balloons - it was a really special moment.

There are no negative associations with Julia’s House despite Kieran having been there at a really sad time. For us it is a happy place where children are spoilt rotten. It just feels like home to us.

When I walk Ollie into the Mermaid Room I always tell him this was Kieran’s room. When Kieran died, all his nurses and carers created memory jars and everyone at the hospice wrote down memories of their time with him, which was lovely. We still read those notes today.

Julia’s House has given us so much support, so much love - there has always been someone to talk to, someone who will listen when we have been through some dark times. 

Julia’s House has been like a second home to us. The care team and the other mums I have got to know have been like an extended family. We have made some wonderful friends and those friendships will be enduring.  

No-one wants their child to go to a hospice, yet when Ollie finally gets discharged we will be genuinely sad to leave this very special place. 

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Julia’s House has given us so much support, so much love - there has always been someone to talk to, someone who will listen when we have been through some dark times.

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