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Poppy was diagnosed with Neurofibromatosis type 1 just before her 2nd birthday.
She was referred to a paediatrician due to a delay in her walking. During her examination he started to quiz us about some cafe au lait birthmarks she had. After a few more questions we found ourselves walking out of the appointment with a diagnosis of a condition we had never heard of!
We obviously jumped straight on the Internet to find out what this all meant and realised we were faced with something that could go unnoticed through her life or otherwise could be ultimately fatal.
In short, Neurofibromatosis is a genetic condition which causes tumours to grow along your nerves. For more information on this condition, please see http://ghr.nlm.nih.gov/condition/neurofibromatosis-type-1
We tried to be as positive as possible and hoped she would not develop any of the horrid health problems. The clinical plan was for Poppy to have close monitoring and be subjected to an array of tests. She has undergone various eye tests, sedations, poking, prodding and even electrocution! Poppy takes everything in her stride and is smiling and charming to all she meets. The only sign I ever get of her fear is a squeeze of a hand and a little special look.
As time progressed more side effects were identified and it became clear to us that we were not going to get through this unscathed. However, Poppy's positivity has kept us all bright.
Unfortunately in April 2014 Poppy was diagnosed with a brain tumour. The most scary words we have ever heard! Poppy is now under the care of Great Ormond Street Children's Hospital and the specialist team at Guy's Neurofibromatosis centre, and is being monitored with tri-monthly MRIs and eye examinations. We have been blessed so far that the tumour is not growing fast so at present chemotherapy has been held off.
However as Poppy is present on the oncology ward regularly she sees and plays with many children who are undergoing chemo and have lost their hair. At our last visit Poppy decided she wanted to help her 'friends' and have her hair turned into a wig. So at the end of January, Poppy will be having her hair cut off and donating it to the 'Little Princess Trust'.
We also wanted to raise funds for The Neuro Foundation while raising awareness of Neurofibromatosis.
Poppy still has such a long way to go with this condition and we have no idea what the future holds for her. But what we do know is whatever happens, Poppy will be there with a big smile on her face!!
