“Oliver was born on 6 October 2021, a younger brother to Emma, 7, and Jack, 4.
I had a relatively ‘normal’ pregnancy up until about 26 weeks, when I started experiencing reduced movement. After Oliver was born, he was taken to the neonatal intensive care unit (NICU) as he was having some respiratory issues.

We got to go home and start our new life as a family with three children, but when Oliver was about eight weeks old, we started to notice that he wasn’t meeting any of his milestones. He developed aspiration pneumonia and several other infections and was admitted to The Royal Surrey County Hospital for various tests. He had a feeding tube fitted which he still has now.  

We were told Oliver had a rare genetic neuromuscular condition but to this day, almost two and a half years on, we still don’t have a formal diagnosis.  The doctors are struggling to get to the bottom of what his condition exactly is.

Oliver swallow and a (muscle weakness), his stomach doesn’t empty, he has an unsafe swallow, and can’t swallow anything. He picks up a lot of chest infections and suffers with constipation. Thankfully, we have open access to The Royal Surrey County Hospital so we can bypass the GP when Oliver is unwell.
Oliver vomits all the time and hasn’t put on any weight in over a year. Nighttime is the worst as I am constantly worried about him vomiting in his sleep – there are nights where I don’t get any sleep at all, or if I am lucky, I will get a couple of hours.

Oliver has developmental delay and is about a year behind where he should be. He can crawl and has just started pulling himself up to stand.

I had to give up my job as a teacher when Oliver was born, but it is something I hope to return to at some point. Oliver has a place at White Lodge Nursery in September which I think will be great for him – we have some positive things to look ahead to.

We have recently been assigned a carer for Oliver who comes to the house to help administer his medication, look after him, and give me a little respite.

We are awaiting surgery where Oliver will have a new feeding tube in the hope that it will help him gain some weight. He will have an MRI on his brain and some other investigative surgeries. There are still a lot of unknowns about Oliver’s condition and his future, but I am focussing on small steps, and the next one is getting him to gain weight. Personally, I think it helps me by not having a diagnosis for Oliver – I can stay positive and focus on the areas where he is doing well. I live day-to-day and don’t think too far ahead.

Oliver is such a happy, special boy – he loves people, he is easy-going, strong, and resilient. He loves going for walks with his frame and in his wheelchair, and he adores his siblings.

My daughter Emma is Oliver’s young carer. Both Emma, and my son Jack, are fantastic with Oliver and they have become very empathetic since he was born. Jack is still very young himself, so he doesn’t really understand why Oliver has to spend so much time in hospital and he often asks difficult questions.  Momentum organised some play therapy for Jack, which has really helped him.

We first heard about Momentum after a conversation with one of their Family Support Workers, Emma, who had spotted us regularly visiting The Royal Surrey Hospital. Emma told us about the charity and how they help families, and our relationship started there. We spend a lot of time at St. George’s Hospital too, so we are supported by Momentum there as well.

I am on my own, so I don’t have anyone who can take over or help me with looking after Oliver when I am at the hospital. We are there for days at a time and are often in our own room as we can’t risk Oliver picking up any other infections. It can feel very isolating and as though time has stood still. It is reassuring to know Emma or another Family Support Worker from Momentum are there to sit with Oliver while I grab a sandwich or have five minutes to get some fresh air.

The nurses at the hospitals are brilliant but they are very busy and obviously need to focus on the medical needs of all the patients.  Having a friendly, familiar person to talk to from Momentum has really helped my wellbeing and has broken up some of the very long days. 

Emma has visited our house to check in on us, and I have also attended some of the Momentum coffee mornings, where I have had the chance to meet other parents that are going through similar experiences, and that has really helped.

As a family we have been had a respite break at one of Momentum’s lodges in the New Forest, and we have also been for a trip on their riverboat. Both experiences were great and a very welcome break.

In December we had a doorstep visit from Santa. Ollie had just come out of hospital, so the timing couldn’t have been better. It was a special experience and a lovely surprise, especially for my other children, Emma and Jack.”