Emma is three years old. She loves ice cream, piggyback rides, going to the zoo and balloons. She is loving, happy and, it has to be said, sometimes very stubborn. And she’s our daughter.
We live in Singapore because of my work, and we both have roots in the UK and Czech.
Recently, after the sudden onset of seizures, Emma was diagnosed with oligodendroglioma, a rare tumour that occurs in the brain, and particularly rare in children. She had surgery shortly afterwards and spent 2 weeks in hospital recovering. The operation was largely successful and most of the tumor was removed but due to its location some could not be removed safely.
She’s been through so much in such a short time but is still so happy - and has a really positive outlook about her "boo boo"
Her next scan is in two month’s time and, if necessary, we’ll need to consider Proton Beam therapy as it's less harmful than standard Radiation Therapy for someone as young as Emma. However, this kind of therapy is not available in Singapore and we may need to relocate to the UK or Czech. We may also need to consider additional surgery.
In the meantime, we are looking for Emma to receive additional and alternative therapies in Europe prior to her follow up scan. These therapies include the use of cannabidiol (CBD) and a very strictly controlled diet with extensive supplementation. The treatments have received extensive breakthrough research which shows huge benefits in both shrinking gliomas and controlling seizures. However, CBD is only legally available in certain European countries which has meant a temporary move away from Singapore for Emma so that we can access this treatment for her.
To access the therapies needed, Pavla, my wife, has temporality relocated to Czech with Emma, and I have just left them to return to be with our eldest daughter, Anna, in Singapore where she has been continuing with her schooling, enjoying her friends and experiencing as normal a life as possible. But it’s difficult. We are a family completely united but, at the moment, divided by miles.
I have been able to take time out of work to focus on Emma and my family but I am going to leave Google, my present employer, at the end of September and this will mean that our medical insurance will also cease, and any new medical insurance policy we access won’t be willing to pay for Emma’s ongoing treatment. Whilst we wait for the next scan and what may happen next, we want to give Emma the very best chance to fight what she’s going through. We are trying to raise money to give Emma the best possible chance and to ensure that she can receive the very best treatment possible.