Alfred the Pirate’s Neurofibromatosis story
This w
eek we were inspired by a special little boy named Alfred and his story about living with Neurofibromatosis – a genetic condition causing benign tumours (neurofibromas) and growths to form around the body and on the ends of nerves, causing impairments affecting the heart, hearing and eyesight.
Alfred has Neurofibromatosis Type 1 (NF1), a very common but less known genetic condition. In half of its cases, NF1 is inherited through parents, and in the other half of cases it is the result of a spontaneous mutation of the genes. For young Alfred, his NF1 had spontaneously occurred as neither one of his parents carried the gene.
The brave and brilliant seven-year-old has been enjoying the sun with his best pal Stanley, the brown Cocker Spaniel this week while mum, Catherine and dad, Darren shared how their little one continues to inspire them in his journey with Neurofibromatosis.
At just three-weeks-old, the family visited our Children’s Hospital every couple of weeks with concerns about little Alfred’s eyesight, worrying that he may have glaucoma in his right eye. To save his sight, at six-weeks-old, Alfred underwent optic surgery with our Eye Department to release the pressure that had built up in his eye over time.
Following tests our team found that a benign tumor had wrapped itself around Alfred’s optic nerve, impeding his eyesight and causing harmful pressure which could have resulted in blindness to his right eye. After two rounds of ‘debulking’ surgery, to remove the growth, Alfred has been able to keep his sight but likes being referred to as ‘Alfred the pirate’ for his brilliant bravery following his surgery. He has worn his eye patch to strengthen his sight in his right eye since he was just six-weeks-old.
Diagnosed by several specialists at 18-months-old, it was confirmed that Alfred had Neurofibromatosis Type 1.
At seven-years-old, Alfred the pirate takes Neurofibromatosis in his stride – not allowing it to prevent him from having fun, making friends, and enjoying the company of his sea dog Stanley.
Connect with Alfred the Pirate's Facebook
Mum, Catherine Hickman said:
“The only thing Alfred was scared about was having to shave his hair for the operations, his last surgery he was only three and a half years old, and he’s only recently had to go back for surgery at the Great Ormond Street Hospital, so there wasn’t too much hair lost in the process. He’s so friendly, chatty and bright – he has lots of friends and hasn’t let his Neurofibromatosis hold him back.
“Advice I would give to other parents would be to find other people in the same position. We do a lot through social media, making friends across the UK. It normalises the condition for your little ones and helps you to also find a sense of community.”
Patients, like Alfie, are supported by our Clinic Genetics Team, including Melanie Murrell, Neurofibromatosis Specialist Advisor, who is one of 12 specialist NF nurses, part-funded by Nerve Tumours UK, the charity supporting 26,500 young people with this condition in the UK, and has worked nationally on campaign to bring more awareness about Neurofibromatosis.
We’d like to say a big thank you to the family for sharing their inspiring story with us, along with their advice for other parents and children with Neurofibromatosis.
For more information around our Neurofibromatosis nurses head to their dedicated website page and find out more about