WHEN Zane Smith was born on December 17, 2008, he appeared to be a healthy baby boy weighing in at 7lb.
But in the months that followed his family quickly realised all was not as it seemed. Zane was found to be suffering from a life-changing and potentially fatal genetic condition.
Cavernous haemangioma – known as Cavernoma – affects about one person in 600 in the UK, without any symptoms. About one person in every 400,000 is not so lucky, and clusters of abnormal blood vessels form in the brain and spinal chord.
The results can lead to dramatic changes in behaviour and potentially death.
Zane’s parents, Lee and Kim Smith, are now trying to increase awareness of the condition and raise money to fund research into this little-known illness.
Mrs Smith, 36, told The Hunts Post: “Zane seemed perfectly fine for the first seven months, but then he started being sick and had what seemed like a bad cold.
“We took him to our GP who told us it was swine flu. The symptoms started to get much more regular but each time we went to see the doctor we were told it was a virus and sent away.”
Mrs Smith, 36, of Essex Road, Huntingdon, said she felt constantly “fobbed off” as Zane’s health deteriorated.
A referral to Holly Ward at Hinchingbrooke Hospital in December 2009 changed everything.
In what turned out to be the first of many MRI brain scans, doctors discovered Zane had 15 cavernomas in his brain – four the size of raspberries.
One, in the right frontal lobe, had started hemorrhaging, which his family later discovered accounted for Zane’s erratic behaviour.
“One minute Zane would be sitting still, the next he’d be shaking his head, batting his ear, running wildly around into walls and doors,” Mrs Smith said. “We later found out that because he has so many cavernomas – each in a different part of the brain – it affected him in different ways depending on which one had started to bleed.”
In the months that followed Zane and his parents made numerous trips to Great Ormond Street Children’s Hospital in London to see consultants, but there was still no expert knowledge about the condition.
The family decided to concentrate Zane’s treatment at Addenbrooke’s Hospital in Cambridge where he undertakes yearly MRI scans. The latest, a month ago, showed that another cavernoma had developed, bringing the total to at least 17.
But because the cavernomas are so deeply embedded, the risks of operating to remove them are too great.
“All Zane’s cavernomas are micro-hemorrhaging but it could be fatal to operate,” Mrs Smith explained. “It’s traumatic – you’re always on edge praying that this is the day he doesn’t have a major bleed, but at the same time you want to treat him just like any normal boy.”
Mrs Smith, who is also mother to Keira, 14, and Lily, 7, said the family’s priority was to ensure Zane had as normal a life as possible while raising money for Cavernoma Alliance UK.
The family organised a bag-pack in Sainsbury’s on Friday (April 6) which raised £1,100, and Mr Smith, 28, is undertaking a skydive in June. The family is also organising a ball in September.
Mrs Smith added: “He’s such a happy boy and looks a picture of health to anyone who doesn’t know.”
INFORMATION: To sponsor Lee Smith’s skydive on June 16 visit www.justgiving.com/jumpforzane For more details of Cavernoma Alliance UK visit www.cavernoma.org.uk