Our son, Felipe, was born six years ago with a very rare disease called Osteogenesis Imperfecta, the main symptom being that bones fracture easily. So far, he's had 11 fractures, several fissures and vertebrae crumbling. It is not the only symptom, there is the possibility of bone deformity, lax ligaments, respiratory difficulties, etc.
Because it is a genetic disorder related to the body's production of collagen, a cure hasn't been found yet. It doesn't mean that there's nothing one can do to improve physical condition. Apart from the treatment of the fractures, one should try physiotherapy and a healthy lifestyle. We have tried all this since Felipe's disease was diagnosed, when he was two months old, after having suffered five fractures in the same hospital where he was born.
A problem which we had thought about for some time, and for which we couldn't find any solutions or palliative care, was the deformation of bones, ligaments and muscles, possibly related to the immobilisation of the limb after fracture.
He was having two physiotherapy sessions per week since he was 18 months old, and we had achieved important improvements in Felipe's physical condition. He could now walk short distances by himself. In spite of all this his head, neck, chest, hands, feet and legs were all deformed to a greater or lesser extent.
It is important to clarify that Felipe had an almost normal life for a child his age. He started school when he was two, before compulsory schooling begins, and he is now at a state school with pretty good results. He manages on his own, and the only difference with the other children is that running and jumping can be dangerous for him.
I don't remember exactly when, last spring, Carmen, my wife, saw a programme on TV talking about certain techniques - strange and exotic to our ears - that helped correct postural misalignments. She wrote down the phone number and that's how we got in contact with Arturo and his team.
They were very interested in Felipe's case, and we were told that some deformities could be corrected with patience and with our help. We went to see Arturo once a week and we learned some very simple exercises that we practised with Felipe every day as a normal routine.
We even managed to learn three very difficult words: sotai, shiatsu, yasuragi.
Amazingly, after a few weeks, both his legs became the same length, his neck began to loosen up and he could look straight ahead. His head, which was flattened laterally became more "normal", more rounded.
I say amazingly, because in spite of Arturo's team faith in their technique, I don't think they expected such good results so quickly, since they think more long-term.
After a few months the improvement was evident. The two centimetres difference in length between each of Felipe's legs had all but disappeared. His muscular tone had improved and he was looking straight ahead. We continued with his physiotherapy and swimming sessions which we knew helped a lot.
One day, talking to Arturo, I mentioned that Felipe was prone to catching colds and that the doctors thought this was due to him having a weak immune system, but it was not related to his disease.
He explained to us that certain massage techniques could help and we jumped at the opportunity. The following winter the times he had a cold were drastically reduced, although we had had him vaccinated. I don't think it's important which helped him the most: I am sure both techniques helped.
Last December Felipe had a femur fracture and was operated in order to have a metal implant inserted. He had to stay in hospital for a month, and at home for a few months. We couldn't take him to see Arturo during this time.
Today, Felipe still has some deformities, but very few compared to a time before these techniques were applied. He's again capable of walking small distances and has a good muscular tone thanks to everybody's work, but above all, thanks to his own effort. There have been other problems such as a fractured finger, etc.
We do the recommended exercises almost every day, and we hope to see Arturo again as soon as possible.
We don't know what the future holds, because with this disease one has to take it as it comes. Anything can make you stay in bed for months, or unable to write, or to walk.
But in spite of drawbacks, and ups and downs, we believe that Felipe will be a good person when he grows up, and that he will be able to manage more or less on his own. And this will be thanks to his doctors, his own efforts, his therapy and thanks too to Arturo and to sotai exercises.
Madrid 2002