Despite his parents being told he might not survive birth, Jawad arrived safely. However, he has a rare genetic condition, a congenital disorder of glycosylation, His parents were stressed out and exhausted until they heard about our hospice, and we now support them here and at home.
There are few things more devastating than being told during pregnancy that your child has problems and may not survive to term. That’s what happened to Jawad’s family, yet he was safely delivered in November 2005.
“The first few years were very hard,” says his mum, Saima. “Jawad has a rare genetic condition, a congenital disorder of glycosylation, and it was just affecting everything. I was stressed out, and couldn’t deal with it. I was tearful a lot of the time.”
When Jawad started school, his family liaison worker quickly realised that our support would be helpful. So Jawad and his family came to have a look around Forget Me Not Children’s Hospice. “I did wonder how my family would react to us going to a children’s hospice, and how we'd adjust to being supported by strangers. But they’ve just been brilliant from day one,” says Saima.
At Russell House and at home
Jawad and his family are supported both at Russell House and through our Hospice at Home
service. “The hospice is a lovely, magical place, indoors and out,” says Saima. “You can walk anywhere in the grounds, and just be yourself with your family. The support they provide is never intrusive. They don't try and take over, and they never do anything without checking with us first.
“Jawad absolutely loves going to stay at Russell House. We drop him off, and he thinks he’s going on holiday! We just pack his suitcase and off he goes. We can ring at any time to see how he is," adds Saima. "I sometimes ring at two or three in the morning to find out how he is, and someone always answers the phone and reassures me.
“When the hospice team comes to our house, they do lots of activities with all my children after school. They’ll also dress them, give them baths and play with them. It gives me time to do things I wouldn’t otherwise get to do. I can spend time with my older children and help them with their homework. The hospice team are just lovely people and our children get on with them so well.”
The difference our hospice makes
“Life was really hard before,” remembers Saima. “I didn’t get enough sleep, so I’d often find myself shouting at the children. And it was getting to the point where I just wasn’t living my life: I was struggling through to the end of each day. Now, my life is more organised and I always look forward to tomorrow."