“They gave her a year to live, but she lived to the age of 9 – which was a surprise to everyone”.

When Mahsoomah visited Richard House recently to talk about her experience as a bereaved mother, it was the first time she had returned to the hospice since losing her daughter, Maryam almost 4 years previously.

Accompanied by her uncle Abdul, owner of local business Arq Homes, she opened up about her memories of Richard House and why 4 years on from Maryam’s passing, it still holds a special place in both their hearts.

Maryam started to have seizures just 8 hours after she was born. At this point they knew her life was going to be a constant struggle. Five months later, she was finally diagnosed with beta-mannosidosis, a condition that, to this day has only affected around 20 individuals worldwide. There is no cure.

Doctors advised Mahsoomah to bring Maryam to Richard House so she could have a break from her caring duties.

Maryam loved visiting Richard House

“The first time I came I was very nervous. I didn’t know much and hadn’t researched about it. I just knew it was a children’s hospice.

The staff looked after us both. They asked questions about her and took time to get to know us both. They would ask important questions about how she likes to sleep and they’d have a cup of tea with me and ask me how I’m coping.

Maryam loved coming here – she was always so excited. We would always come to the fun days, animal days, world days and pantomimes – things she normally couldn’t access, but she could experience it here.

When we were leaving she would always throw a strop”!

Mahsoomah always remembers feeling very safe at Richard House, as it was a judgement free zone.

“I could be here with other people that weren’t staring at her or judging her or making comments about her. It was definitely a safe space. I could do whatever I wanted and be myself with her here, knowing we’re both supported, not just her.

The judgement, you can understand from children, as it’s curiosity as to why another child is like that, but when it comes from another adult, it’s far harder to take.

But at Richard House, I would meet other parents on event days, and some of them I still know and talk to now – they’re my friends”.

 Donate to our Ramadan Appeal

Abdul struggled when he went to visit Maryam in hospital.

“I used to dread going to the hospital when you see that the most important thing for someone is life.

When I came to Richard House, it felt a little bit different. And when I say a little bit different, I mean a lot different. The set up, the trees, and the playground. In Maryam’s room there was sensory lighting. In my mind it made it all easier.

I love the concept of human beings being compassionate to each other, and I felt it more here than at the hospital”.

A small local business with a BIG heart

Abdul’s business has supported Richard House for many years, particularly around Ramadan, where he makes a generous donation out of his profits every year. He and his colleagues also take part in the annual penguin waddle.

“Obviously personally it’s a local charity and we like to support local, because we were born and raised in the area, so we have a lot of local projects going on. It’s from the heart.

I’m always talking about the work you guys do. I also like to leave a legacy. Life is short. When I go I want to know that I’ve done something in my area.

It can happen to any one of us. Anyone could have a situation where your children become ill.

My message to businesses is that if you are in that position to contribute or help, then try and find a good local cause. It doesn’t even take much. If you can’t do it financially, chuck on a penguin suit – it hardly cost us any time and we had a good laugh”!

Mahsoomah and Abdul visiting Richard House in February 2022

The Gift of a Smile

This Ramadan, we’re focusing on the importance of a smile at Richard House. So how did Richard House help Mahsoomah, Abdul and Maryam to smile?

“It gave me a break” said Mahsoomah. “Taking the stress away from me when I was here. I didn’t have to worry about medication, feeds, if she’s okay. Maryam loved the sensory room, and would open her eyes wide open when in there. Generally she wouldn’t pay attention to much, but she was sensitive to light. That made the sensory room one of her favourite places to be”.

During Ramadan and at Eid, Mahsoomah, Abdul and the whole family get together.

“Ramadan is a spiritual time where it’s bizarre, something happens to your mind where you start caring more” said Abdul. “Giving up food and drink means something happens to you where you start caring more about the poor. We’ve got it at our finger tips, we can have whatever we want. So at Ramadan, when fasting, you start caring more about the less fortunate. You get away from the day to day materialistic way of life that you get caught up in.

Mahsoomah reflects on her memories of Richard House during the Holy season.

“I would take Maryam in the morning and I could spend time with the family. Without Richard House, I wouldn’t have been able to properly observe Ramadan and Eid”

 

To give the gift of a smile this Ramadan, we hope you will consider supporting Richard House with your Zakat or by keeping our families in your prayers this Ramadan. To donate to our Ramadan appeal, please visit justgiving.com/campaign/richard-house-ramadan-2022