'He's such a little hero'
A MUM from Hanham has described life in lockdown with her little boy, who has a rare life-limiting condition.
Four-year-old Azaan Waqas lives with mum Asia and his brother Raihan, nine. He has Joubert syndrome, a neurological disorder that was detected at Asia’s 20-week scan.
As a result of his condition, he only sleeps for four hours every night, cannot talk, has difficulties lifting his head and feeds through a tube. He also has a failing kidney, which would require a transplant by the time he is 10. However, doctors have told Asia that the operation would be a lot for him to go through, and so it may not be something that is possible.
Asia used to work as a primary school teacher, but had to give up work to care for Azaan full time. She is able to get help from charities, including Jessie May, who look after Azaan for three hours each month.
Asia wants to raise awareness of Azaan’s condition. She told the Voice: “Lockdown this time around is a bit different as Azaan is now going to Warmley Park School, which he is really enjoying as he loves doing the different activities. However during the last lockdown we didn’t step out of the house for months.
“Azaan is such a little hero, and looking after him is very full on as he can’t really be left by himself and it also involves a lot of lifting too, which can sometimes be hard physically. Our normal routine involves getting him ready for school, taking him to school, bringing him home, setting him up for a feed and trying to keep him entertained. I have lots of support from my parents and siblings who live locally, and in 2019 we had 11 emergency admissions to hospital, which meant that Raihan had to stay with my parents.
“If Azaan gets cold or slightly dehydrated, it means a hospital admission for him due to his kidney condition and weak immune system. He also has scoliosis, which is another battle for when he gets older as it will affect his organs – it’s all such a lot for my little man to go through.
“As a family we don’t do any fundraising, but at the moment we are looking for a new house that would be properly adaptable for him. Our current one has stairs but no lift, so I have had to move Azaan downstairs. We’re managing, but it is difficult to get him around. I do find things difficult, and I’m on auto pilot most of time because Azaan needs so much of my help and I feel guilty that I can’t give Raihan much of my time too. My main focus is to make as many happy memories as possible, and take Azaan out as much as we can. It has been a rollercoaster. ”
Azaan is due to have his tonsils taken out this month, which should have been done during the last lockdown as he suffers from sleep apnoea. Asia added: “Sometimes it seems like he’s gasping for air, so I really hope it will help him to sleep better and stop so many episodes happening during the night.”
To find out more about Azaan, visit www.instagram.com/adventuresofazaan