Today’s Therapist International Trade Journal   -   Issue 46  

May June 2007   

The Bowen Technique Batten’s disease - a small help with a rare disease              by Janie Godfrey with thanks to Alastair Rattray
  

Bowen Technique practitioner and teacher Alastair Rattray has been able to give some small amount of relief to a young brother and sister who are suffering with a disorder called Late Infantile Battens – CLN2 Neuronal Ceroid Lipofuscinosis. 

Late Infantile Battens is a rare genetic disorder with just over 500 known cases worldwide.  To be affected, a child must inherit two defective genes, one from each parent. If each parent carries the defective gene, chances are 1-in-4 that any child will be affected. 

The disease generally starts between 2 and 4 years old.  It strikes without warning and the first signs of its presence are seizures, loss of muscle co-ordination, blindness and mental deterioration. 

Battens leads to a vegetative state and is ultimately fatal (usually between the ages of 8 and 12). The defective gene causes a deficiency of an essential enzyme, resulting in the body’s inability to break down lipopigments (fats and proteins). The build up of these fats and proteins ultimately forces the child’s brain cells to shut down. 

Alastair has been treating Jordan Harris (now aged 8) and his sister Jasmine (now 5) with Bowen since early 2004.  When Alastair first met him, Jordan’s left foot was impossible to flex even a millimetre and his neck was very, very stiff on both sides.  As a result, he was in a lot of pain.  

After his first experience of Bowen treatment, he was much more comfortable as noted by his left foot not being in full spasm and his neck a lot freer.   Jordan’s body was almost completely rigid when the Bowen started, but he responded magnificently in the first few years of being treated and only has some spasm at times, but seemed mainly comfortable. 

His mother said the Bowen effect usually lasted about 10 days.   Alastair treats him every 2 to 5 weeks and will sometimes get a call to give an emergency treatment.  

Now, Jordan has virtually no movement capabilities, apart from turning his head.  He has some small ability to control his hands and experiences some sudden uncontrolled muscle jerks.  He gets chest infections, as he is not moving much.  He can also have up to five fits per day.     

It is, of course, hard to measure exactly how much relief Jordan gets from Bowen – or any treatment – as he is not able to communicate it, at least verbally, as the extent of his expressive range is smiling and laughing or crying.  

Once, Alastair arrived in response to an emergency call from Jordan’s mother to find him crying with pain and in great distress.  After a few Bowen moves, Jordan burst out laughing – clearly relieved.  Alastair is also sure that Jordan tries to communicate his awareness of the Bowen treatments by directing a very clear, focused look at Alastair when he arrives and during the treatment, which is very different from the usual rather vacant visual scan he gives his environment.   

Jordan’s little sister, Jasmine, also has Bowen regularly when Alastair comes.  She is much less affected by the disease than Jordan is at this point and even underwent an experimental gene therapy operation in New York at the end of 2005 to see if that would halt the advance of the Battens disease.  She was fine for about 16 months but sadly there have been fresh signs of the disease progressing, although the operation at least seemed to slow it down a bit. 

Mr and Mrs Harris set up the Jordan Jay Trust after Jordan was diagnosed with disease to raise money for research into the disorder – for more information or to make a donation see: www.jordanjaytrust.com. 

 The Bowen Technique is making a unique contribution to Jordan and Jasmine.  Their quality of life is certainly better that it would seem to be without something that eases the awful muscle pains associated with this disease – it helps to soften the blow a little bit.       

Contents provided by the European School of Bowen Studies (ECBS)   

For further details about the Bowen Technique please contact Karen on 01954 260 982 / 07714 995 299 or email [email protected]