Meet Alex

While coping with guilt and exhaustion, Rainbow Trust’s support makes all the difference. Emily, mum to Alex and Roman, tells us about the invaluable support she has received over the last eight years and how it has helped her to cope as a single mother.

"When I was pregnant with Alex, cysts were found in his cheek and face during a scan. He was diagnosed with severe cystic hygroma, a collection of fluid-filled sacs that result from a baby’s lymphatic system not properly developing during pregnancy.

When he was born his airway was so squashed by the cysts that they put a tracheostomy in to help him to breathe better.

Being told my three-day-old child needed a tracheostomy was terrifying. He had his first operation at three months old to remove some of the cysts and free up his airway.

He was so tiny and I just cried. I remember them wheeling him off in this little cot. It was horrible.

Emily, Alex's mum

A community nurse told us about Rainbow Trust. Their South West Care team has now been supporting us for eight years.

When he was young, Alex needed to be looked after 24/7. He could pull the tracheostomy out and just stop breathing when he was sleeping. It is really worrying seeing your child turn blue.

Our Family Support Worker would sit and play with Alex or she would watch him while he slept.

I would be able to do housework that I had not done for ages, that I had no time for, knowing that Alex was being watched and was safe.

She spent time with Roman as well. It was nice for him to have someone who focused on him because, as much as I tried, I would still have to regularly check on Alex. Roman liked having that attention for himself.

When Roman was a little older, he struggled with feelings of anger and frustration. He didn’t know how to deal with the emotions and needed additional support. Our Family Support Worker helped him to deal and cope with these emotions. This was invaluable. He was always happy when she came.

Sometimes we had to rush Alex to hospital and she would pick Roman up from school and stay with him until we got home.

Roman was so young, he couldn’t walk home on his own and be left unsupervised. It was so helpful just to be able to ring her and ask.

We are now supported by Family Support Worker Michelle.

Michelle comes into the hospital and sits with Alex so I can grab something to eat. Going to hospital is stressful and to know someone is there and can help him when he needs it is reassuring.

She also visits after school, plays and does crafts with Alex, giving me a bit of quiet to sort things out around the house. She chats to me about what is happening.

It is nice to speak to someone who knows where you are coming from when you are talking about doctors, hospital appointments and medical issues.

During the school holidays Michelle picks us up and takes us out for the day. Recently we were able to go to Legoland in Windsor with her. It is such a long journey, very difficult with Alex and all his medical equipment.

With Michelle we didn’t have to worry about the travel.

Because there is only me, trips out are always difficult. I can’t leave Alex and I can’t leave Roman. With Michelle, they are both looked after. We get to branch out a bit more and do stuff that wouldn’t be possible if Michelle wasn’t there.

Just knowing someone is there to help me, help Alex, and help Roman when we need it makes all the difference.

The support of a Family Support Worker like Michelle can help a family cope as they juggle caring for their seriously ill child, hospital appointments, and the needs of their other children.

Donate now

By sponsoring a Family Support Worker today, you will be helping more families to receive this vital support. Please donate today.

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

Get support