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Sibling Support: Izzy's Story

September 18, 2019

Our daughter Izzy was born at 39 weeks and as she was growing up, she hit all of her milestones early – rolling and crawling all over our house! But everything changed when she was seven and a half months old.

Guest Blogger: Natalie

Izzy developed an upper respiratory viral infection, meaning that over the course of the next 12 hours, she began to completely lose control of her body. We called an ambulance, and they managed to stabilize her. However, later that evening I was heartbroken when she had a 20-minute seizure.

For a week, she was treated at the Royal Alexandra Children’s Hospital in Brighton, but with no signs of improvement, we were transferred over 50 miles from home to the Evelina London Children’s Hospital.

The next day, she was taken for an MRI, and I was told that she had brain damage consistent with a rare metabolic condition, Glutaric Acidemia Type 1. This is a condition when the body can’t process certain amino acids (‘building blocks’ of proteins) and it causes a build-up of substances which can prove to be harmful.

I was shocked to find out that any illness she developed would need to be treated in the hospital with IV fluids and medication – even the common cold. I thought my little girl would spend most of her childhood in the hospital.

However, over the next five years, we had the odd week here or there in our local hospital, Royal Alexandra Children’s Hospital, with sickness bugs and such. It wasn’t until May 2016 when Izzy started developing problems with her gut that I realised we were going to be staying in hospital much longer.

Being a single mum with a sick child, it was torture being away from my other two children as well. I had no idea when we would next be together as a family.

A week away from Bobby and Demi was barely manageable, but as it got closer to a month, I needed to have them with me and so did Izzy.

One of the nurses understood the struggles we were facing emotionally, so she referred us to the Ronald McDonald House.

Luckily, we were offered a family room in the Ronald McDonald House Brighton, just minutes away from Izzy’s bedside so that her brother and sister could stay with me as well. When we first stepped into the House, it was stepping into a friend’s home. It has a real sense of home and that really helped us settle in.

I honestly don’t think myself and the kids could have coped without the support of the House and thankfully we could stay for as long as Izzy was in the hospital, which this time lasted an incredible six months.

Once we were discharged, Izzy was in and out of the hospital, staying at home for no more than two weeks at a time. Each visit could be between two days to four weeks – there was just no telling.

In September 2017, nearly a year since we were discharged from that first long stay, Izzy was admitted into the Royal Alexandra Children’s Hospital again. This time, it lasted five months, meaning she was in the hospital for Christmas, New Year’s, her sister’s birthday and her own birthday. But Ronald McDonald House Charities UK was there for us again, keeping us together.

Over Christmas, the House staff really put in the extra effort for us families. They had a beautifully decorated Christmas tree, gifts on Christmas morning and a big Christmas dinner to enjoy together. Although it sounds like something small, when you’re confined to your sick child’s room, it’s hard to remember what is going on in the outside world. It helped to bring some normality to the crazy life I found myself stuck in.

My other children found it odd at first to all be in the House, sharing a room, but it soon became like second nature. They loved waking up and putting on the TV and having their own things surrounding them.

At first, I thought that our situation was so different from the other parents staying at the House, that I would find it hard to make friends. Most of the families were dealing with premature babies from the Trevor Mann Baby Unit, and I had a seven-year-old child with complex needs, however, it didn’t stop me from chatting, and I’ve made friends for life through doing that. The staff were also so approachable and were there for me when we were having a bad day.

Having a Ronald McDonald House is so important because it allows you to stay close to your child. You’re right by the hospital in case of an emergency, but also, as a parent, you have a quiet place to escape when it all gets too much. It’s somewhere for you to rest, and a well-rested parent is in a better state of mine to be making better medical decisions than one that is exhausted.

We would have been lost without the House. I can’t imagine having to have left Izzy alone at the hospital for hours on end or to have left Demi and Bobby for days at my cousin’s house. If I had been at home while Izzy was admitted, it’s a 30-minute drive and I hate to say it, but if something had gone wrong, I may not have been able to get to the hospital in time.

I would say to everyone reading this story to please do all that you can to raise as much money as you can. If it wasn’t for people fundraising, we would haven’t this vital support at a time when families need it the most.

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