Living with someone with complex needs can be extremely demanding and affect each member of a family differently. 22-year-old Tamaana explains how Shooting Star Children’s Hospices has helped her navigate growing up with a sister who has a life-limiting condition.

When youngest of three daughters, Humairaa, affectionately known as Spud, was born she experienced a distressed birth. Due to a lack of oxygen, she suffered brain damage and developed cerebral palsy. The severity of her condition meant the family were introduced to Shooting Star Children’s Hospices in 2005, the year our Hampton hospice opened.

“I was around eight or nine when I first started to come to Shooting Star Children’s Hospices,” explains Tamaana, “but it was when Spud got sepsis in 2015 when I really got to appreciate it. Spud was in the hospital in ICU and on life support for nine months that year. When she was eventually discharged, she was transitioned through the hospice, so we had support with her care before we went home.

Spud’s needs are very complex, she’s on a ventilator, she’s got diabetes and epilepsy and, due to the cerebral palsy, she’s immobile and unable to talk, but she has the biggest character – anyone who knows her will tell you that,” Tamaana smiles.

“Her care is 24 hours a day, including night-time feeds and having to turn her every two hours as she can’t turn on her own. Thankfully we have got nurses that come in sometimes, but obviously the other times it’s mum and I sharing it.

“It’s a lot but I love her – she’s my everything. We have a particularly close bond because I’ve looked after her from a very young age. My mornings consist of me getting into her bed and having cuddles. She’s like the glue of the family that keeps us together, we’re all very close.

“Shooting Star Children’s Hospices helped us – not only by looking after Spud, so we could have time with mum, but also making sure that as siblings we were being thought of, because a lot of the time people ask how the parents are, but people don’t imagine how it impacts siblings.

Over the years Tamaana has come to see Sarah, who is Head of our Family Support team, for music therapy sessions. “She would help me understand and process things, like what does it mean if your sister is in hospital? Understandably my mum would want to shield us from that, but at the hospice they took time to explain it to us in a way, as children, we’d understand.

“When I was doing my GCSE’s, Spud was in ICU, so I was going from school to the hospital and doing my exams and it was very stressful. I really relied on the hospice during that time, going there to revise and have a place where people understand and ask if I was ok. In fact, it’s deeper than that – at the hospice, everyone just gets it.

“Being able to come to talk to someone, for myself, has been amazing. I’ve seen Sarah for sessions at different times over the years, my first session was when I was ten years old and now, I’m 22 – she’s been with me as I’ve grown up and I honestly don’t know what I’d have done without it, they’ve been my shoulder to cry on.”

Tamaana and her sister, Sanam, often attended Siblings’ days held at the hospice. “Some of them were very silly, I remember a Shooting Star Olympics where I was throwing a baguette as a javelin! It was so stress relieving – something I don’t think I understood as a child, it was just super fun, but all the activities were cathartic – like doing colour runs or paint throwing.

“It was also so great to meet other people and have fun and feel a bit of normality, being in a safe environment where I could just enjoy myself wholeheartedly, and Sanam and I could do it together which we loved.

“Being Spud’s sister, being her carer it’s a big part of who I am. You’ve got to be positive mentally – Spud is the way she is, and I need to live a good life for her – if she can wake up with a smile everyday – so can I.

“I’m more confident, more positive, had more opportunities and Shooting Star Children’s Hospices have helped me with all of that, feeling comfortable and happy to talk about having a sister with complex needs and helping me realise it’s ok, I’m not on my own and my sister Spud is a blessing.

“I feel I had 15 mothers at the hospice – it’s the simple things that make it the best, just being a friend, like a family member, being a shoulder cry on – that’s the greatest gift that Shooting Star Children’s Hospices has ever given us. Having someone on our side.”

This is part of our Summer edition of Shine magazine

This article is from our Summer 2022 edition of Shine. Read more from the digital version here. If you’d like to receive our printed Shine magazine, which comes out twice a year, these are sent to everyone who has made a donation within the last 12 months, and opted in to receiving post.