Nour's Story

Full width content image

Ammar is father to eight-year-old Nour. In March 2022, Nour was diagnosed with Heart Failure and a condition called Dilated Cardio Myopathy. This required Nour to be put on the urgent waiting list for a new heart.

Ammar explained how Nour’s diagnosis happened very quickly.

‘One day, Nour complained of a stomach ache, so I ended up taking her to hospital two times. Both times they would tell me that there was nothing wrong – she didn’t have a temperature or anything. On the third time I took her, the doctors sent her for a scan. The scan showed that her heart was bigger on her left side. They immediately sent her to Liverpool hospital where she stayed for two weeks, before sending her to Freeman hospital.’

It was at Freeman’s hospital that Nour was fitted with a Berlin Heart while she waited for a heart transplant for 11 months.

Ammar recalls how challenging those long months were, both for Nour, and for the whole family.

‘When she had the machine fitted, Nour wanted to play like the other children – she wanted to jump and play, but the machine meant she couldn’t. She would say “If I take this machine out, I can play like everyone else!” I had to reassure her that when she would get her new heart she could play like them all the time!’
‘Nour always wanted to know how long she would have to stay in hospital for, but I could never give her an answer because even the doctors didn’t know.’

Ammar describes how it was often very difficult for Nour to understand exactly what was happening and would often be very upset and angry.

‘She is only 8 and she had two pipes coming from her tummy. For the first two months she was in shock and was very upset and angry. She would cry a lot because she didn’t understand. Then she began to understand better that she needed a new heart.’

Ammar and his wife also have three sons at home, so Nour being unable to come home made family life very challenging. At one point, Ammar’s son was taken ill while Ammar was at the hospital with Nour;

‘When the ambulance came for my son, my wife told them ‘I can’t leave my two kids here!’. Her husband and daughter were in the hospital and her son was also sick. It was a very difficult time for our family.’

Ammar described how he would often spend long days with Nour in the hospital, from 8am – 7:30pm, keeping her company and trying to keep her busy.

When Ammar saw Rainbow Trust Family Support Worker, Monica, coming to support another child on Nour’s ward, he asked a social worker if they too could benefit from the help. The family were able to self-refer and Monica has now been supporting the family since August 2022. Monica provides the family with hospital support which allows Ammar to have some respite and get himself some food. Before Monica, Ammar explained how Nour required constant help:

‘She needs help with everything, I can’t leave her. There was no time for rest. I’d only leave if Monica or the teacher were coming.’
‘When Monica comes, I can have a break. She plays with Nour and they have lots of fun together, It’s easy for Nour to get bored, she would say to me ‘go home and get mum, I’m bored!”. So it’s nice for her to have Monica as well.'
‘Monica has made life easier, it just gives me time for a break – I want to have Monica’s help all the time!’

Nour received her heart transplant in January 2023 and is recovering well. Both Nour and her family are over the moon that she is home.

‘After the transplant she is completely different – she was so excited! She is so pleased to be home and can’t wait to go back to school. She’s missed out on life for the past 11 months, so we are thrilled for her to be doing so well.’

Please consider donating to Rainbow Trust Children's Charity today to help us support more families like Nour's.

Donation image
Donation payment types
Donation payment values.

£5 could provide bereavement support to help a family cope with the death of a child.

Continued support for as long as a family needs us

Continued support for as long as a family needs us

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.

Donate today