Saturday, August 18, 2007

European toddler heads to USA for surgery to control seizures

THE dream of finally getting Billy Caldwell his American treatment for his epilepsy has taken a huge step towards becoming a reality this week, as the flights were booked and hospital appointments finalised.

Billy's family will leave for Chicago from Dublin on September 9, before meeting the world's elite children's epilepsy consultants two days later. Then on September 13 Billy will have a 3D multi-modelling MRI scan (a facility unavailable to Billy in Britain) to determine if he is a candidate for surgery.

Due to Billy's severe intractable epilepsy condition he could go into a life-threatening seizure at any time. If that happens at home, mum Charlotte administers a dose of diazepam and hooks Billy up to an oxygen tank until he comes out of it, and if he doesn't it is a race to the hospital for the next stage of treatment.

When Billy embarks for America next month, this back-up will not be there, making this an extremely harrowing journey, with considerable risk.

Charlotte explains, "We have been granted permission to take Billy's oxygen tank as far as the departure gate, where we then have to empty it before boarding the plane. If Billy then has a seizure we have to use oxygen that is linked up to his seat onboard.

"However, when we arrive in Chicago our tank will be empty which is extremely worrying in case Billy goes into a seizure so I am trying to arrange for a hospital representative to be waiting for us with a new oxygen tank."

Even though this journey could be Billy's chance of living a healthy life, Charlotte remains full of trepidation due to the severity of treatment her son will have to endure and the reality of the dangers that exist.

"We have been arguing and fighting for so long to get Billy his American treatment and now we are so close it actually feels that it is going to happen, but I can't help but still feel worried," said Charlotte.

"If they decide to operate, it is a severe operation. With any sort of brain surgery there are risks and that is what I would be worried about.

"Even weaning Billy off the drugs he is on now, he will be going into clinical seizures so they can analyse how his seizures display, which is something I am also really worried about.

"But I am glad there is an option of treatment and hope of a future, something we were told for so long was not possible. There is still a long road ahead of us," she added.


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