By Lisa Green
THIS time of year is always difficult for us as a family after we were given the devastating news that changed our lives forever.
Our gorgeous son Danny had a brain tumour, which in itself was devastating, but following surgery we were told he also had posterior fossa syndrome (PFS), which meant nothing to us at the time as we had not heard of it.
Essentially, it is an acquired brain injury that causes mutism. The children are often unable to speak for weeks, or even months, and when the speech does come back it is often monotone, breathless and of a different quality.
The children are often unable to show emotion.
When Danny’s speech returned and he laughed, he actually said “ha, ha”, just in a monotone voice without smiling. Danny was unable to use his arms and legs, to hold his head up or to swallow. Danny was sick frequently, not just from chemotherapy, but from the effects of PFS.
Every meal time was a struggle. Even when he was fed through a tube in his tummy, he was often still violently sick. Some children are sick 10 to 15 times a day. Every day is a struggle for these children and this is why the Danny Green Fund supports children who are suffering from posterior fossa syndrome.
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