Zainab loved spending time at Bluebell Wood, so much so that she even called it her ‘holiday home’. The hospice gave Zainab the independence she’d always wanted, and gave her family precious memories they’ll carry with them for the rest of their lives. Mum Salma shares the story of her beautiful little girl whose life was sadly too short:

"Zainab was diagnosed with Congenital Merosin Deficient Muscular Dystrophy at just 6 months old,” she  said.

“This is a life limiting condition causing muscle weakness which meant that she was unable to do things independently and completely depended on me for all her care needs.”

Zainab used a wheelchair to get around and had respiratory difficulties which meant she her care was a 24/7 responsibility.

"As you can imagine this is very difficult for any family to cope with. I was a single mum and I felt tired all the time from lack of sleep and didn’t have any overnight respite, which I so desperately needed.

“I had day respite from the nurses and support workers so that I could spend some quality time with Zainab’s sister, Laila.

"But I had a disturbed sleeping pattern getting up 2 or 3 times a night, as Zainab was unable to turn or roll herself.”

In 2008, after being introduced to Bluebell Wood’s community nurses, Salma finally found the help she needed.

"I was a little reluctant of the whole hospice idea at first and had no idea what to expect.

But after much persuasion I went to visit the hospice -  and loved what I saw. It had a very homely feel and the services offered for Zainab and the whole family were great.

"They truly looked after our whole family and recognised all our needs.

"Many people think negatively when hearing the word ‘hospice’, like I did. But when I visited I saw the hospice in a totally different light.

“Zainab used to call Bluebell Wood her holiday home and visited many, many times after it opened in 2008. There were times we all went as a family and times Zainab wouldn’t allow us to come as she enjoyed her time there so much she didn’t want to share!

“The hospice gave her the independence she wanted and she felt a part of the family there too, as we all did.”

In 2010, Zainab’s courageous battle sadly came to an end.

"Sadly my beautiful Zainab passed away aged 7 in November that year. I have nothing but happy memories of Bluebell Wood and I will never forget how happy they made my Zainab. I will be forever indebted to them.

“I don’t know what I would’ve done without all the support from the staff at Bluebell Wood. They are all truly amazing."


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