Fife family share their story as part of CHAS's new Ramadan campaign
Zain Adnan, from Thornton, and his family have been supported by the charity since he was one and a half years old – he’s now nine.
The campaign aims to increase awareness of CHAS’s work supporting children with life-shortening conditions within Muslim communities and to encourage donations during the 30-day long Islamic celebration.
Zain was born three weeks prematurely at Kirkcaldy’s Victoria Hospital in September 2013, weighing just 2lbs 9oz.
The tiny tot was kept in hospital for three weeks because of his low birth weight and he was diagnosed with bronchiolitis, a common lung infectioin that often affects babies and young children.
Mum Asfa, who was 27 at the time, hoped that once her beautiful baby boy got over his illness he would begin to thrive, but as the days and weeks went by she knew in her heart “something was just not right”.
She explained: “He wasn’t moving very much, his breathing seemed quite laboured and he was really sleepy. With him being my first child and because he was so low in birth weight I tried to put my fears to one side and kept telling myself it was just because of his infection.
"My worries kept growing though and while Zain was in the neonatal ward in Kirkcaldy a visiting doctor from the Sick Kids Hospital in Edinburgh saw him and said she thought something wasn’t right and that she’d like us to make an appointment with her.
"We got one in the January and by then he was also not feeding properly and was still really sleepy.”
Mum and dad were given the “devastating” news that Zain had a condition called Spinal Muscular Atrophy with Respiratory Distress (SMARD).
The inherited condition affects the nervous system causing muscle weakness and respiratory failure with symptoms usually beginning between the ages of six weeks and six months.
Asfa, who is now 36, said: “From the moment Zain was diagnosed our family’s lives changed forever and were told he would need round the clock care for his whole life.”
After diagnosis he was given a tracheostomy, where an opening is made in the front of the neck so a tube could be inserted into his windpipe to help him breathe, and Asfa and dad Adnan had to be trained to care for him.
Zain spent the first full year of his life in the Sick Kids Hospital in Edinburgh.
Asfa continued: “Zain is completely disabled, fully ventilated and has a permanent catheter so he cannot do anything for himself and needs round the clock care. Some days are especially hard and he often has to be admitted to hospital for urgent care which has happened a lot in the past two years.”
When Zain was around one and a half Asfa asked for him to be referred to CHAS for respite stays and since then the whole family have visited Rachel House children’s hospice in Kinross on various occasions.
Zain now has three younger siblings, Harris who is five, Hashim who is three and one-year-old Adil who all “adore” their big brother.
"The boys are all so good with Zain and understanding of the level of care he needs,” said Asfa.
"They do have their wee moments as all siblings do but it’s nice they’re all so close and love each other lots.”
The siblings also love their visits to Rachel House.
She said: “It is such a welcoming and happy place and Zain and his brothers have so much fun there taking part in all the arts and crafts with the activities team, going in the jacuzzi and just having fun together. It’s great for and Adnan too to have the support of the carers and be able to just relax when we are there.”
The Ramadan campaign runs for six weeks from March 22 and will feature stories of Muslim families CHAS has supported just like Zain’s.
Speaking about her involvement in the campaign, Asfa said: “I think it’s great that CHAS is doing this campaign as it’s a good way of connecting with many Muslim families they support and also bringing them together.”
Charlie Leavy, CHAS fundraising campaigns co-ordinator, added: “We are proud to be launching our first ever Ramadan campaign following in-depth consultation with Muslim staff, volunteers, families and community groups.
"We know from the CHiSP3 study we commissioned in 2020 that children from a South Asian background are more likely to have a life-shortening condition than those from a white background. As a charity committed to reaching every child in Scotland with a life-shortening condition we hope we can raise awareness of CHAS services within Muslim and Muslim South Asian communities during the month of Ramadan as well as diversify our supporter base at the same time.”
To find out more visit https://charity.chas.org.uk/ramadan/