Zainab's story
Zainab was diagnosed with Congenital Merosin Deficient Muscular Dystrophy at 6 months old. This condition is a life limiting condition causing muscle weakness. This condition meant that Zainab was unable to do things independently and completely depended on me for all her care needs. Zainab was not mobile and was therefore dependent on her powered wheelchair to get about. Zainab also had respiratory difficulties, which meant that she had to have supervision 24/7, and also required overnight ventilation.
As you can imagine this is very difficult for any family to cope with. I was a single mum who 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. I had a disturbed sleeping pattern getting up 2 or 3 times a night, as Zainab was unable to turn or roll herself. Luckily in 2008 I was introduced to the community nurses from Bluebell Wood…. I was a little reluctant to the whole hospice idea and had no idea what to expect. 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 the whole family and recognised all our needs.
Many people when hearing the word ‘hospice’, like I did, think negatively. But when I visited I saw the hospice in a totally different light. Zainab used to call Bluebell Wood her holiday home and visited the house many many times since it opened... there were times we all went as a family and times Zainab wouldn’t allow us to come as she enjoyed her time at the house that much she didn’t want to share. The house gave her the independence she wanted… she felt part of the family there as did we all.
Sadly my beautiful Zainab passed away aged 7 last November. I have nothing but happy memories of Bluebell Wood and I will never forget how happy they made my Zainab and I will be forever indebted to them. I don’t know what I would’ve done without all the support given to me past and present by all the staff at Bluebell Wood. They are all truly amazing.
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