Shakeerah was diagnosed with a brain tumour, a grade 3 Ependymoma, just after her 1st birthday. We were in Germany at the time, visiting friends. She had a seizure and we rushed her to hospital. They did a CT scan and told us that she had just 4 hours to live. The tumour was preventing fluid from draining freely and so was building up in her ventricles causing pressure. If they did not immediately relieve that pressure she would die. They didn’t have time to secure a slot in theatre, so they ended up clearing the ward she was on and operating there and then. It was truly terrifying.
1st birthday, 3 weeks pre diagnosis
6 weeks later, during chemotherapy
Shakeerah was flown directly to Great Ormond Street Hospital where she had two, day long operations to remove the tumour. We were told later that they nearly lost her on the table during the second operation.
Because she was so young, they couldn’t give her radiotherapy – which was the preferred treatment for this kind of tumour – so she was given chemo instead. We were told there was a 60% chance the tumour would return without the radiotherapy, but we said no – there is a 40% chance that it won’t. Even whilst in deep shock during those early days we have always tried to remain positive, and to focus on what can be done, rather than being held up by what can’t. This mindset has proved to be essential in securing support and treatment for Shakeerah ever since.
Shakeerah is now 8 years old and in the last 7 years she has had 48 different surgical procedures and 109 general anaesthetics. The last anaesthetist we saw said he is not aware of any other patient, including adults, who has received so many general anaesthetics.
Shakeerah spent 2 years pretty much confined to a hospital bed. Her muscles deteriorated and she never got the chance to learn how to walk. She still cannot walk unaided. She is deaf and has limited vision in her left eye. The tumour, and the surgery, damaged 3 critical nerves on her left side that have left her with facial paralysis and an inability to swallow or speak. She had a tracheotomy and has a feeding tube.
People who know about the tumour sometimes ask me how Shakeerah is doing and when I say that she is in remission they look at me, all delighted. And of course, it is a great thing that she is in remission, but they don’t realise that remission and ‘cure’ is not the end of the story. It’s the start.
Shakeerah has been left with huge challenges, not just in terms of her health, but also her educational and social development. When Shakeerah was born I kind of mapped out her future– don’t all parents do that to some extent? And then, overnight, all of that changed. However, although her future looks different to what we had first envisaged, I can still see her potential. I just wish others, especially those who have the tools and the power to help her, could see it too.
Too often, Shakeerah has been written off, on paper, without any understanding of her as a person; of what she can do, her character, her mindset. When we first applied for a place at a school with a deaf resource centre attached, they took one look at her medical history and all they saw was ‘brain tumour’, ‘tracheotomy’, ‘feeding tube’, and immediately decided no – we can’t support this. But after a year of fighting, we eventually secured her a place and she started in Reception in September 2019, aged 7, two years behind her peers.
Shakeerah loves school and is doing so well. Within 12 weeks she could read 40 words. She is also learning British Sign Language (BSL). Her teachers say she is flying; academically she is as able as the next child. But if I had not fought – tooth and nail – for that place at that school – all that potential would still be going to waste.
Left: First day at school
Fighting is what I have done, consistently, to get Shakeerah the support she needs. Schooling is just one example. Rehabilitation is another. I believe strongly that if the right support and interventions were put in place earlier, then Shakeerah would be a lot further forward in her recovery, especially in terms of her mobility. When we finally left hospital, Shakeerah was 3 years old and I fought, hard, to secure some physiotherapy. Eventually she was given a place on a programme called ‘Little Steps’ where she saw a community physiotherapist in a group setting, once a week. This consisted of just 20 minutes of physio. It was nowhere near enough. There was no tailored or 1:1 support at all and Shakeerah and I both found the whole set up so stressful. When she was 4 years old, I finally managed to secure her 3 months of daily 1:1 physio at The Tadworth Children’s Trust, a facility that happens to be on our doorstep. Within just 3 weeks with this intensive, tailored support, Shakeera was able to bear her own weight for the first time, a vital step. We would have loved her to stay on, but the cost (£750 a day) was a barrier.
Success Charity has helped us see what is possible. We have been given access to a new telerehabilitation platform which effectively means that Shakeerah can practice her physio exercises every day at home – and then have a remote 1:1 session with her physiotherapist once a week. She loves it, its all computer based and fully interactive. Its fun and during Covid it meant that her vital physio sessions didn’t have to stop.
Success see the potential in children like Shakeerah – they don’t write them off. They help open doors, rather than close them, (which has been my experience for so long!) At Success’s annual conference I see and listen to all these young people who have overcome huge challenges to achieve great things, who are forging ahead and creating bright futures for themselves, and that is so refreshing and so inspiring. It gives me hope.
Success also deals with us as individuals. They understand what the limitations of the system are, what the limits of the funding are, but they also understand what is possible and what children like Shakeerah can expect to receive in terms of support and treatment, and they help make accessing that support so much easier.
Sometimes it feels like all I’ve done these last 7 years is fight and I strongly believe that it shouldn’t be this way. I don’t want the moon; I don’t want or expect any more than what Shakeerah is entitled to – but I do expect that children like her, and their families, should not have to do battle to secure the help, resources and treatment that should be readily available from our public services.
