Sophie had a Diffuse Intrinsic Pontine Glioma (DIPG)
Speaking to Louise and Chris about the moment they noticed something different about Sophie, and the time they found out of Sophie’s diagnosis, they told us:
“We had noticed that Sophie’s walking was becoming a little stumbly and wobbly, so we took her to our GP. After first being told to “come back in six weeks if she’s no better”, we went back to the surgery a week later, as her symptoms had worsened, and insisted to be referred to an expert. That was on a Friday evening and by the following Monday lunchtime, following a scan, we were told by a consultant at Darlington Memorial Hospital that Sophie had a brain tumour. We were immediately taken up to the Royal Victoria Infirmary in Newcastle, where a more detailed scan the next day revealed the tumour to be a Diffuse Intrinsic Pontine Glioma (DIPG).”
A DIPG is a very rare but fast-growing brain tumour. It forms in glial cells in a part of the brain stem called the pons. The pons controls the nerves and muscles that help us perform basic but vital functions such as walking, talking, breathing and swallowing. A DIPG takes over this area of the brain and gradually stops these functions working. Sophie’s parents were told that the tumour was inoperable and her prognosis was terminal, with an estimated life expectancy of just nine months. “We were told to make memories” Sophie’s parents recall.