Sanam Rafiq readily admits that the care of her six-year-old daughter had left her at “breaking point”.
But the support which she has been given from a Yorkshire children’s hospice has helped transform her family’s lives.
Her six-year-old daughter, Malaika Azeem, has been diagnosed with a serious heart problem and needs constant care with regular visits to hospital.
“It’s been a battle trying to fight for everything,” said Ms Rafiq. “Last year it just came to a point where I was at breaking point.”
She has found help at Martin House in Boston Spa, which has given her, Malaika and her three sisters a much-needed break together.
“The time we spent at Martin House was an extraordinary experience. It was so good to get away from everything,” added their mother. “Going to the hospice gives me the chance to talk to other parents and realise I’m not alone. Their children might have different needs but we are all in the same boat. I don’t need sympathy - it’s so wonderful to be able to speak to people who understand.”
Martin House is one of the hospices to benefit from the new Yorkshire Children’s Hospices Appeal, which is being led by The Yorkshire Post. The newspaper, and its sister titles across the region, are joining forces to help raise £30,000 for the three children’s hospices based in Yorkshire.
Malaika was diagnosed with congenital heart disease before she was born, which causes increased heart rate, shortness of breath, chest pain and mobility problems. The youngster suffers from frequent cyanosis, otherwise known as ‘blue episodes’, and had a tracheotomy - an opening in her throat to help her breathe - for almost 11 months after her most recent surgery.
“The last 12 months have been really stressful for us all,” Ms Rafiq said. “In January last year, Malaika underwent open-heart surgery and doctors were unsure as to whether she’d pull through.
“After the operation, I cared for Malaika myself, changing her tracheotomy at home, as well as managing her physiotherapy. Since then she has had several severe blue episodes and is constantly in and out of hospital.”
She says her family are a great support, but she has struggled to find suitable expert help and so is Malaika’s constant carer, as well as juggling the needs of her other daughters, 13-year-old Nimrah, 10-year-old Romesa and three-year-old Saira.
Because of Malaika’s needs, activities which other families might do regularly are almost impossible.
“Malaika takes up all of my time and I often feel guilty not being able to spend time with the other children. They sometimes get upset at the amount of attention I give her, but when she falls ill, they understand why she needs me so much. My eldest, Nimrah, acts as a mother, sister and friend.
“She will help to wash and change Malaika and is a huge support to me. I’ve always tried to be honest with them all about the reality of Malaika’s condition and we take each day as it comes.”
Last summer, Ms Rafiq contacted Martin House.
“Malaika loved her first visit to the hospice. When we got there she didn’t know where to look first, and was so excited saying, “look at this, look at that”. She didn’t want to come home at all,” the mother-of-four said. “Before our first proper stay in November, Malaika had been very ill and I was barely sleeping. The stay came at just the right time for both of us.”
One of the her treasured memories from their visit was captured in a CD of nursery rhymes that Malaika recorded in the hospice’s studio.
“When I listened to it, I was in tears. It’s building up these memories that’s so special and all the little things that we do together that mean so much.”
Before Christmas, Martin House arranged for the whole family to go on a special Monarch flight from Leeds Bradford Airport to search for Santa.
“They were absolutely amazed by it and it was a brilliant experience for all of them,” said Ms Rafiq.
The fundraising appeal will support Martin House and the region’s other children’s hospices, Bluebell Wood in Sheffield and Forget Me Not in Huddersfield. The three will benefit from the Yorkshire Children’s Hospices Appeal, the charity of the year for Johnston Press publications in Yorkshire.
We are aiming to assist the facilities which need to fundraise for 90 per cent of their income - totalling over £13m a year - as they receive only 10 per cent of what is needed from the Government.
• Donate to the appeal online. Or, send a cheque, made payable to Yorkshire Children’s Hospices’ Appeal, to: Kayla Lindsey, Yorkshire Post, No 1 Leeds, 26 Whitehall Road, Leeds, West Yorkshire, LS12 1BE. You can also download our donations pack, containing all you need to know to help the appeal.
• Are you supporting the appeal? Tell us about it via social media using #ychappeal or email email@example.com.