Emilio’s Journey So far.......
Emilio was born on the 30th July 2008, a cute little baby with a full head of hair. At 10 months old we were referred to Gt Ormond Street in London as his head was an abnormal shape, we were told he needed surgery and he had a condition called Metopic Synostosis. He was operated on in November 2009, major head surgery which lasted over 5 hours. Being a little fighter he pulled through this and life goes on for us.
Then on the 24th April 2013 we found him in bed early morning after having what looked like a stroke! We were rushed to A&E at Hinchingbrooke in Huntingdon where he had a further seizure and became very poorly. After numerous tests he was diagnosed with Neurofibromatosis or NF1 for short. In 2014 he suffered another seizure at school and is now taking anti Epilepsy medicine. We also discovered he has hydrocephalous (fluid on the brain) which may require further surgery. All Emilio’s conditions are unrelated…just very bad luck!
Neurofibromatosis is a neuro-genetic condition affecting the nerve tissue, Emilio may live a long healthy life or he may be dealt with numerous medical conditions which include: skin lumps, large disfiguring benign tumours, tumours on the nerves of sight, curvature of the spine, brain and spinal tumours, internal tumours, increased risk of epilepsy and malformation of the long bones which can cause problems in children and may result in operations/amputation. Neurofibromatosis is more common than Cystic Fibrosis but still there is little known about it.
It is living with the unknown which has changed our lives and Emilio’s life forever, normal everyday activities are not as straight forward as they used to be. Emilio tires very easily so we have to adapt quickly to meet his different needs depending if he is having a “good” day or not. Emilio has also lost some of his confidence in doing things on his own unless we are near him. He is seen by over 12 different specialists at 4 different hospitals, going to the numerous appointments are part of his everyday life.
Emilio has now undergone 6 Neuro surgeries in 2 years to relieve the pressure on his brain, the road to recovery is a long way off but he is still smiling!
We just hope and pray that one day in the not too distant future they find a cure.
Emilio is our inspiration, he takes everything in his stride and always has a smile on his face.
Every penny helps The Neuro Foundation Charity help families like us in the UK.
Thank you from the bottom of our hearts.
Mel, Jose, Emilio, Luis and Mimi
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