After years of struggling with two disabled sons, Henrietta Spink has placed her hope in a new treatment, says Cassandra Jardine
Henrietta Spink found a note from her 15-year-old son's teacher in his home/school book last Wednesday. "Freddie's walking seems to be improving hugely," it said. "We walked to the leisure centre and he's been very sprightly on his pins!'' The surprised tone of the note delighted Henrietta because she and her husband, Michael, have deliberately not told their sons' school that they've been trying a new therapy - repetitive Transcranial Magnetic Stimulation (rTMS) - to alleviate some of both boys' disabilities.
Over the 19 years since her elder son, Henry, was born -looking perfect, but strangely floppy and unfocused -Henrietta has been engaged in a ceaseless struggle to solve the medical puzzle presented by his brain. On scans, it appears normal, yet he is unable to walk or talk.
Freddie was born missing half his diaphragm and with his organs in the wrong places. His parents assumed that he would develop normally, once those defects were fixed, but he was slow to walk and talk, and displayed compulsive behaviours that led to a diagnosis of autism.
Caring for two such severely disabled boys has been a nightmarish struggle, as their mother described in her best-selling book, Henrietta's Dream. Henry needs to be watched constantly because he can have 20 fits a day. He has to be carried everywhere and needs two adults to feed him: one to hold the spoon, the other to stop him making an uncontrolled gesture that will throw the bowl across the room.
Freddie can be wildly destructive, trashing his room at night and constantly waking his parents. He also projectile vomits, due to a constriction in his throat that has required numerous operations.
"I've always had this vision, with Henry, that one day we will find the key that unlocks him," Henrietta says. That drive led her to investigate endless therapies, and to become so distressed with the money and emotion wasted on some of them that, more than a decade ago, she set up the Henry Spink Foundation, a charity that gives parents information on a range of therapies.
She knows how easy it is for hope to overrule reason, so when her boys tried rTMS she wanted objective evidence on its benefits. That is why the note from the teacher, who didn't know they were trying something new, was a real boost.
"rTMS sounds and looks wacky," she admits. A device like a plastic doughnut is placed on the head and a rapidly alternating current is sent through the coil, producing a magnetic field that passes unimpeded through the brain. This "repolarises" cells: depending on the frequency, it can slow down or speed up brainwaves.
Studies have shown that the treatment can help adults with a range of disorders from depression to schizophrenia, migraine to epilepsy. In Canada and Israel it is approved for therapeutic use - but it hasn't been used on teenagers with autism or developmental delays. Working with scientists in Britain and America, the Spink boys are guinea pigs in an experiment that could have a far-reaching impact.