Sarah Jane Chahine
I first met Sarah when she was about 5. She, her mother Ilham and her sister Reem, came to Brighton Unemployed Centre around 2006 and shortly after Ilham became a volunteer. Ilham and Reem had come to this country from Lebanon although Sarah was born here. Ilham was Lebanese and Sarah's father was Palestinian.
Sarah suffered from a bone marrow disease, meaning that it could not produce white blood cells or platelets. It is similar to leukaemia but worse. GVHD Level 4. This resulted in Sarah requiring regular blood transfusions. The hope was that a donor would be found and that the condition could then be cured, however Sarah’s blood type was extremely rare and it was only last year that a donor was found in the USA. About a year ago Sarah had a bone marrow transplant.
Unfortunately, because of the need to suppress the immune system, Sarah fell victim to a variety of viral infections. She spent much of the past year in and out of hospitals, including Great Ormond Street Children’s Hospital in London. On Friday March 23rd we learnt that Sarah was not expected to live much longer and three of us from the Centre went up to see her for one last time. We spent an hour with her and trying to comfort Ilham and Reem. Less than 12 hours later our beloved Sara died.
One of the reasons I have not posted anything on my blog for three weeks is because I have found it difficult coming to terms with Sarah’s death. Because of her illness, Sarah was small for her age, but what she lacked in size she made up for with an irrepressible energy. I called her a ‘jack-in-the-box’. She would jump up and down and be the ring leader for the other children. She was loud, strong and forthright and never shied away from saying what she thought.
When we were organising an outing to the Knowles Tooth Children’s Centre one year, where places are very limited, I had had to leave Ilham and her children off the list because of a lack of places. Whilst not recalling the details, Ilham remonstrated with me but I said there was nothing I could do. When Sarah came back from school and Ilham told her, she immediately came downstairs where I work and in what was her typical style, told me off with hands fixed firmly on her waist. ‘What you mean we can’t go Mr Piggy (an endearing phrase, despite me correcting them that it was ‘Mr Sheep’! It’s originated with motivating children whose picture you are trying to take on outings) 'we are going to Knowles Tooth. Do you understand?’ Suffice to say, all 3 of them came to Knowles Tooth for the weekend.
We organise a large number of children’s outings at the Centre and Sarah and her family came on most of them. At one of the first, to the Bluebell Steam Railway, I bought her a little puppet – a cat – whom she named Caspar and I named ‘Socks’. Much fun was had as I would secretly steal Socks when she wasn’t looking, and on one occasion pinned her up by her tail (for which I received an ear wigging from Sarah accompanied by ‘you naughty piggy’.
Sarah was a little child with indefatigable courage and fortitude, despite her continuing ill-health and her frequent stays in hospital. Not once did I hear her complain about the problems she was experiencing. We had all expected, after a donor had been found, for her to recover and it was only gradually that I realised that her frequent recalls to hospital because of a new infection meant that she might not survive. However that is not something one ever wants to think about. The last year must have been especially difficult for her. She had to stay secluded for the first few months after the operation and even then people didn’t visit her because they were afraid she might catch something. I visited her a few times in hospital in Brighton but I always ensured I stayed away from from any physical contact.
On the evening before her death, we arrived about 11 pm. Sarah was in her own room with her own nurse and just her mother and sister. She had an oxygen mask on and was being given morphine. Breathing was not easy for her. She was clutching her beloved Caspar to her. I announced myself as Tony Sheep and a little voice chirped out ‘Don’t you mean Mr Piggy?’ Even in her final hours she had not lost her sense of humour. And then Sarah proceeded to do what she had done so often in the past, always to great chuckles. Socks (Caspar) emerged from underneath the covers to wiggle his bottom in my direction as I would protest loudly at the insult. It was a routine we had had over most of the years we had known each other. It was with tears that we left Sarah for the last time, knowing that the end was close at hand.
The death of anyone is a time of sadness. But the death of a child is particularly sad. No parent wants to outlive their children. Sarah was half Palestinian and one could not help but think of the hundreds of children whose lives had been taken from them when Israel decided to launch its attack on Gaza in 2008/9. Sarah was unaware of any of these things. Like all children she was more interested in play and chocolate (although she was restricted in her diet). Sarah was only just 11 when she passed away. On Tuesday 26th March, the funeral for Sarah was held at the Ksishia Islamic Centre in Stanmore, Middlesex. Nine of us who knew her went up from the Centre to the funeral, including children who had known her. In the afternoon the Unemployed Centre was closed as a mark of respect for a very wonderful and unique little girl who was so cruelly snatched away from us.
I hope these pictures will convey something of Sarah Jane, the little girl who I was privileged to know. It shows her, more than anything else, as a fun-loving, sensitive child with an enormous sense of humour.