Marwah’s story

A little girl is lying down. She has an oxygen mask on and a pink bow in her hair

Marwah is a happy, bubbly little girl, who has a great sense of humour. She enjoys spending time with her family and especially likes parties and sparkly dresses.

Marwah has a condition called hyaline fibromatosis syndrome. It’s a life limiting condition that affects many areas of her body, including the skin, joints, bones, internal organs and gums.

At Acorns, we are here to help Marwah and her family make precious memories together and provide care from our hospice in Birmingham and in the family’s own home. This enables mum Nizet to spend time with her daughter as ‘just mum’. Nizet explains:

“Marwah’s birth was traumatic. I was induced at 34 weeks and that’s when the panic really started. Marwah wasn’t coming out and I was rushed into theatre.

“I was terrified but it did me good because I was able to deliver her myself. She was a perfect little girl, absolutely perfect. Everything seemed normal and we took our baby home.

“I started to notice something was wrong when I was getting her dressed. She screamed every time I lifted her arms. It wasn’t a hunger scream, it was pain. She wasn’t drinking milk properly either so she wasn’t growing like my other girls had as babies.

“For weeks doctors and midwives told me I was being paranoid. But I knew something wasn’t right. So I took her to A&E. I sat there and cried and cried. I refused to leave until a specialist came to see Marwah. Finally, someone listened to me.”

A mum and her little girl. The girl is on a bed wearing an oxygen mask on her face, the mother tenderly looking at her.

“Test after test came back negative. Everything was ‘normal’. Because symptoms of her condition present later, there were no real signs. She couldn’t quite hold her head up properly, but she could talk, she was eating. Eventually, my husband and I were told to undergo genetic testing and we got our answer – hyaline fibromatosis syndrome.”

“As she grew, you could start to see some changes in her body; her hand features and other little things. Then as a year came on, you could see her face shape changing and she stopped doing things.

“We were told with her condition that as she grew, she would get worse and worse. Marwah is not able to sit up or turn over. She can hardy do most daily things. So it gets difficult for her. She is on oxygen to support her breathing and she requires constant care. At night, we have to get up in the night to turn her every 15 minutes. It’s always constant.”

A nurse sitting near Marwah's bed. Showing her something and talking to her.

“Acorns first came into our lives for hydrotherapy. It really helps Marwah and she loves the pool. Every time she has hydrotherapy, she sleeps through, meaning I don’t have to keep turning her. So, I get a full night’s rest too. I was literally like a zombie.

“I do all of Marwah’s care. She is too precious to me for me to let anyone else care for. But at Acorns I am able to let go. Now we have stays there. I am not ready for Marwah to stay on her own, but at Acorns you don’t have to leave your child. I get a rest from giving care and I’m just Mum. My girls come too, and their cousins join in family splashes. So we all get to have fun together.

“And Acorns comes to us at home. The Outreach service is amazing. Marwah loves her visits from Laura. Together they’ll plant seeds, make cakes, and paint. Marwah loves looking at her own work, and seeing the plants grow.”

“Acorns it’s not just a service. It’s part of my family now. I can go to anyone at Acorns and get help. I’d be lost without Acorns. I think I’d sit I’d sit and cry waiting and watching Marwah.” 

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