Tazim said goodbye to her brave and brilliant little boy Ibraheem when he was just 15-years-old, after several years of making beautiful memories at Bluebell Wood. Now the family are making the most of every moment with his little sister Fathima who has the very same condition. Taz shares the heartbreaking story of the happy-go-lucky siblings, and explains how Bluebell Wood continues to be there every step of the way.

“It was like we were on two journeys at the same time – and there was only one destination,” said Taz. 

“I’ve been there, got the T-shirt – and now I’m waiting to get another. It sounds harsh but it’s true, so we want and need to make the most of every moment we have together.”

The family spent the first few years of Ibraheem’s life oblivious to the battles they were to face. When he was four years old, a fractured leg led to the diagnosis that changed everything.                                  

“He had a full body x-ray and blood count, and we found out that he had a rare degenerative condition called PKAN 2, as well as Pycnodysostosis, a bone disease which was causing his bones to break really easily.

“Our life was turned upside down. Ibraheem had lots of tests and was put on trial medication, and he was given a ventilator to wear every night to help him breathe.”

Ibraheem continued to suffer regular breaks and fractures in the years ahead, as he gradually lost the ability to do the things so many of us take for granted.

In 2015, Taz spotted a poster for Bluebell Wood on a hospital wall – and despite her reservations, she decided to give it a try.

“I wasn’t sure at first – and there was the added pressure of coming from the community that I do. The word hospice and even his diagnosis was challenging for our community.

“But the way I’ve been brought up is to fight for things – so that’s what we’ve done. I want all my children to live life as fully as they can.

“When I read the other stories about families making memories at Bluebell Wood I thought, ‘why shouldn’t that be us’? We had no idea what was coming at the time, or how long we’d have together.”

Taz, Ibraheem and his siblings Fathima, Moosa and Abbas fell in love with Bluebell Wood from their very first visit.

Fathima began by using the hospice’s siblings support services along with her brothers – but this changed  in 2016 after the news the family had feared the most.

“As soon as Ibraheem got diagnosed, the first thing on my mind was do my other children have it. I feared Fathima had it – and I sometimes wondered if I was looking for things in her to confirm what I thought. But it was no less heartbreaking when it was confirmed.”

In June 2019, a broken leg coupled with a deterioration in his breathing marked the beginning of the end for Ibraheem. Over the months ahead, his condition worsened – but the single-minded teenager was determined to say goodbye on his own terms.

“In his final days we stayed at the hospice for three months, and after some incredible hard work and advocacy from members of the care team, we had a plan in place for us to take him home.

“When he passed away at Bluebell Wood, we were due to take him home two days later. I think it was his way of sticking two fingers up and saying, ‘I’m staying here, thank you’.

“Nobody has a child to have to plan for them to die - but it’s dealt with on such incredibly professional and caring level that you can’t imagine. Bluebell Wood really is a hidden gem.”

Ibraheem death left the family devastated, and brought home the reality of what was to come for his sister.

“Ibreheem and Fathima were thick as thieves, and always stuck up for each other and helped one another out.

“They were willing to give anything a go. And always so warm; you couldn’t walk past them together without it putting a smile on your face.

“So when Ibraheem passed away it really hit her hard. She knew about the condition – and she knew you couldn’t hide from it. She’s always asking questions about it. Ibraheem always said she talks too much and asks too many questions!

“Bluebell Wood’s counsellor has been such an incredible support for Fathima since he died, it’s almost as if she’s been on the journey with her. Counselling at Bluebell Wood has really helped us all to make sense of everything.”

After Ibraheem died, the family had no hesitation in returning to the place that had become such an important part of their lives.

“Bluebell Wood has given us the chance to make so many memories. The memories that we have are so  special, as are the friendships we made. Bittersweet but so special.

“We know what’s coming, and we know things aren’t going to get any better. But we need that honesty and we don’t want anyone to sugarcoat it for us.

“After Ibraheem passed away, we all wanted to go back to Bluebell Wood and it seemed the right thing to do. It’s almost as if you don’t have to say the words as everyone there understands. We’re all on the same journey and our one goal is to make memories.

“You can go to Bluebell Wood and be whatever you want to be. It doesn’t matter who you are or where you come from.

“Fathima knows what’s coming too – she’s seen it with her own eyes. She went from being a sibling to a Bluebell Wood child and she’s really thriving with it.

“Bluebell Wood empowers her to deal with her condition, and the amazing staff there have given her the wings to fly.”

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