16 year old Tommy Fantarrow from Amington, who has life debilitating illness’, is set to have much more fun at home and with his friends thanks to receiving a specialist tricycle from fundraising champions, Simon’s Heroes.
Tommy has neurofibromatosis type 1 (NF1), a genetic condition affecting about one in 3000 births. Although many affected people inherit the disorder, up to 50 percent of cases result from a spontaneous genetic mutation of unknown cause. It causes tumours to grow in the nervous system. These mutations keep the genes from making normal proteins and control cell production, cells multiply out of control and form tumours.
Tommy is one of three children born to Mandy Fantarrow and is the only family member to have the condition. He was diagnosed at the age of two with NF1. Effects of neurofibromatosis can range from hearing loss, learning impairment, heart defects and high blood pressure to severe disability due to nerve compression by tumors, loss of vision and severe pain. Tommy’s symptoms include fluctuating blood pressure which causes him to feel weak, dizzy and tired and tumours around some of his organs and behind his eyes which are closely monitored.
At the age of 4 he was hit by a brick on the back of his head which caused a bleed in his brain stem resulting in a stroke. He was in hospital for 8 weeks thereafter and was put into an induced coma on life support. He suffered renal failure which led to the removal of one of his kidneys and had a massive internal bleed. His family were told that he wouldn’t make it. But Tommy was a fighter and after several blood transfusions, started to show improvement. He was given a tracheostomy when he was weaned off life support – he was too weak to breath independently. He was eventually allowed home at weekends after 6 months and full time after 12. He slowly learned how to eat, walk and talk again.
Two years on, in 2005, he suffered two further strokes which caused injury to the right side of his brain and left hemiplegia ; partial paralysis to that side of his body. During treatment doctors discovered he also had Moyamoya syndrome, a disease in which certain arteries in the brain are constricted. When they become blocked, they can cause strokes and hemorrhages. Tommy had 40 holes drilled into his skull to revascularize blood flow to his brain and prevent further strokes. He underwent extensive physiotheraphy which greatly improved his mobility but he never regained his speech and struggles to write. He is rarely without his touch screen iPad which is an invaluable method of communication for him.
Tommy attends Two Rivers High School in Tamworth which caters for pupils with physical and learning needs. Despite the challenges Tommy has endured, his memory, thinking, attention and learning have not been impaired and he is always smiling. ‘He is a bright, alert young man with a flair for I.T’, his mum Mandy told us.
Even though Tommy has reasonable mobility, getting about is still challenging and limits his social life and involvement in family outdoor activities.
Mandy explained that the tricycle has already had a positive impact on her son’s life, ‘It is great to see him out and about enjoying himself. The bike will benefit him socially and will help improve his coordination and balance. The family will finally be able to bike ride together. Thank you to Simon’s Heroes, it is just brilliant what you do.’
Simon’s Heroes is a non-profit making charity group who raise money for nearby causes through outdoor charity events.