Through the month of Ramadan, Chorley based Derian House is sharing stories of families across the region who use the hospice or have used the services the hospice provides in the past.
Zayn Sunni was just three months old when he passed away in February 2024.
His dad, Mubarak Sunni, 46, and mum Zaheeda Sunni, 41, from Bolton, said they continue to receive support from the hospice.
Zayn’s older brother Muhammad Isa, nine, is also supported by the hospice.
Mubarak said: “Before our son Zayn was born, we were told he wouldn’t survive the pregnancy.
“We were told to expect the worst, if he did survive pregnancy, once born, he would not feed, he would need life support and that he could have a lot of issues including issues with his heart and possibly other serious conditions. It was all very negative.
“At this point we were referred to Derian House Children’s Hospice. We were visited at home by the nurses as well as the family support team.
“Derian’s nurses accompanied us to the hospital when we were shown the Neonatal Intensive Care Unit (NICU) and the Special Care Baby Unit (SCBU). They gave us great insight into what to expect.
“When Zayn was born, he did not require too much assistance. He had a heart condition but no other issues related to Trisomy 18 were evident. He went straight to Bolton NICU as he had a low birth weight.
“Thankfully he was only there for a few days before he was transferred to the SCBU where he stayed for two weeks. The main reason for Zayn being kept in hospital was to try to increase his weight.
“He did amazingly well, he defied the doctors’ predictions and did everything they told us he would not do. He was breathing by himself and was feeding and demanded his feeds on time and did not require any additional support.
“As he had a heart defect, a decision was made to fit a feeding tube, so he did not use too much energy during bottle feeds, which would in turn adversely affect his weight gain. Zayn did everything that doctors did not expect a baby diagnosed with Trisomy 18 to do and continued to grow and put on weight and was thriving.”
Mubarak said after Zayn’s initial diagnosis, they did a lot of research about Trisomy 18 themselves and found that studies in America recommended repeat tests after the birth to confirm the diagnosis.
He said: “We requested a blood test straight after Zayn was born. That is when we discovered that Zayn did not have full Trisomy 18, but a mosaic version.
“The outlook was a little more positive and this started to open doors and minds to treatment that was initially refused as Trisomy 18 is classed as ‘life limiting’.
“In hospital, he continued to feed and put on weight. We took over his care with support from the nurses and were allowed to take him home. He was doing really well.
“Zayn was a little rocket, he was very aware.”
“He was due to have surgery in the future to repair his heart defect when he had put on enough weight, but during a home visit, the nurse found an issue with Zayn’s oxygen levels and he was admitted to our local hospital.
“Unfortunately, whilst in hospital, our little boy caught a fatal virus and it was too much for his little body to cope with.
“Zayn passed away in February 2024, at three months old.
“Our family did not know anyone who had been through this kind of experience. This is where Derian House became very important to us all.
“My wife and I started to attend Derian’s Stepping Stones sessions – a support group for parents who have lost their children. Through this, we have been able to meet and talk to other bereaved parents.
“I have been attending the Derian bereaved dad’s group too. I was hesitant at first, but the group is really easy going – we have a laugh and a joke and can talk about our feelings openly.
“For me it is getting to know other dads, what they are going through, what is normal, and how we all cope differently with the loss of a child.”
The charity has launched a special appeal during the month of Ramadan (Image: Nq/Derian House) Derian House cares for more than 400 seriously ill babies, children, young people and their families from across the North West helping them to make the most of every moment.
Care is free for families, but it costs £6 million every year to run services, with only a small amount of this coming from NHS funding.
The charity is appealing for help from the Muslim community during the holy month, asking people to consider donating to help local families in need. The hospice has launched a local campaign with adverts appearing on bus shelters.
Mubarak said: “Derian House has really been there for our son Muhammad Isa as well, we were very worried about how he would cope with losing Zayn.
“The support team at Derian and the friends he has made have really helped him. Because of Derian, he has been able to meet other children in the sibling group who are going through the same situation as him. They meet once a month, either at Derian House or during fun outings which Derian organises for the children.
“He has also had some counselling, and although he did not need it for long, it was very helpful for him to be able to open up and share his feelings.
“Even now, Derian House remind us that they are there if we need them. Just having somebody there for you, it means a lot.
“The support our family has had from Derian House, is something we will never forget. They were there for Zayn, now they are there for us.”
