Supporting Siblings of Terminally Ill Children

Asia’s family was referred to Rainbow Trust in March 2020, at the very beginning of lockdown. All other external support that they received completely stopped, and that is where Family Support Worker Wendy stepped in to help them to cope

Azaan turned four during the first lockdown. He has a severe form of Joubert’s syndrome - a rare disorder that affects the brain, causing different degrees of physical, mental and visual impairments. Azaan has developmental delay, low muscle tone, respiratory issues, polycystic kidney disease, is non-verbal and visually impaired. He can’t hold his head up, is fed via a pump, sleeps about four hours a night and needs looking after 24 hours a day.

As Azaan grows, after months and months of hospital admissions, his condition is worsening. With a permanent partially collapsed lung he can’t be without oxygen when he has a cold or an infection.

Before lockdown, Azaan attended a nursery which gave Asia some time to catch up on some sleep and other jobs. But all the external support stopped during lockdown, and Asia found day-to-day life both mentally and physically draining.

Asia says: “Since I became a full-time carer, I have lost my identity. I have lost friends, I have lost my past way of life. My job, my career goals, my dreams, they all had to be forgotten. I don’t have a social life nor any time to relax and unwind anymore.”

Asia also has a nine-year old son, Raihan, who needs attention from her, and Asia was worried about the effect lockdown would have on him. Even before coronavirus, it was difficult to take Raihan out because Azaan has serious special needs and he is in and out of hospital a lot. Lockdown made everything worse.

Raihan needs fresh air, to run about, to enjoy time to be a child, to play, to be just a boy and Asia can’t always give him that so Wendy, their Family Support Worker from Rainbow Trust, started supporting them in April 2020, at the height of the pandemic.

Wendy introduced herself to Raihan by video call, and they went on to have weekly video calls which involved playing games, story reading, and general chats.

Wendy surprised them one day by knocking on the door with a box full of games, chocolate eggs and arts and crafts packs so Raihan could get creative and have something different to do.

All of this started to make a difference to Raihan throughout the following months and, when lockdown restrictions have been eased, they have been to the park, out for pizza and burgers and bought ice cream from the van – all things that a regular nine-year-old would do.

Asia says: “Most of my time is spent looking after Azaan and, unfortunately, Raihan has had to grow up pretty quickly. Like most children with siblings who have complex needs he is left on his own a lot.” This is where Wendy steps in and helps out: by taking Raihan outdoors or playing activities indoors, whatever he chose when restrictions have been eased, and by video call when in lockdown.

Raihan has opened up to Wendy and has started talking about his feelings. This is invaluable as he also needs dedicated attention and time to feel special - Wendy is giving him that.

“Wendy has been a big, positive change to my life. I know that Raihan has somebody he trusts and he enjoys both his time with her and happy trips out. I can see that he is becoming a happier boy.

“It hasn’t been easy, it is a lonely journey, a journey where most moments I live in fear and depression but with the help from Wendy we keep going,” Asia told us.

And Raihan said: “Wendy takes me to places and buys me ice cream. I wouldn’t be able to go to these places if she wasn’t there. She basically does everything nice for me. She is kind, really nice and amazing.”

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Links:

• Never alone
• Rainbow Trust Children's Charity home