Last updated: 22nd January 1997
Edwin Bouchard: Born 24th January 1992.
Edwin in the summer of 1995
Latest News Update on Edwin at 22nd January 1997 - Supplied by Uncle Remi
Probably thanks to the care of Pomponiana institute 's team, Edwin'state is stabilized. Even if he can't be at his home, he has a normal life, he goes to school, has a lot of friends and is independent thanks to the electric chair carrying his ventilator which he drives alone. He continues to be taken off the ventilator very frequently, sometimes for a couple of hours. Almost every week-end, he is taken back to his family and, sometimes, spends the whole night. His ventilator is not a problem for him to speak (some people don't understand how he can speak, but here is the fact!), and thanks to his aunt, orthophonist, he has made tremendous progress in language, too much his father thinks when Edwin wants to have a discussion with him at 5 in the morning.
However, we have noticed that Edwin does not have good visual powers. After having done some vision tests, it seems that the problem comes from the optic nerves. They are probably affected by the TPI deficiency, the same way the muscular nerves are.
News on Edwin as at 22nd July 1996
Edwin's father Gilles has recently written with further details about Edwin. Edwin is showing signs of improvement and has recently been allowed to come off his ventilator for up to 1 hour each day. This allowed Edwin to have a swim in the sea! His spirit, determination and personality are showing through and he is much loved. Also, I received a e-mail from Edwin's Uncle Remi on the 18th July, telling me that Edwin had been allowed off the ventilator for a full afternoon and for the first time in almost a year had managed to stand on his own two feet!
How Edwin's Uncle, Remi Bouchard, discovered Edwin was not alone!!
Edwin's Uncle Remi Bouchard, found the TPI Trust Home Page when surfing the INTERNET for information about TPI. He originally started to surf the NET to find info about TPI a year ago when Edwin was diagnosed with TPI. The Doctors in France knew very little about TPI and had no literature to tell the Bouchard's of the severity of the condition or information about other affected children. The only other TPI family the Bouchard's were aware of was a family from Lyons, whose children had all passed away with the condition.
Edwin was diagnosed with TPI in May 1995 at the age of 3 years and 4 months. Below is Edwin's story as told by his Uncle Remi:
Edwin was born in Nice, in January 1992, he is the second child of Gilles and Laurence, their first child is a little girl, Maureen, born in 1990. She never had any health problems. Edwin had to be transfused very soon after birth because he was very anaemic. His level of hemaglobine has always been very low. If I remember well he has been transfused 3 or 4 times since his birth. His growth is normal but very early on in his life it was possible to see that his hands and feet didnit work correctly. He has never been able to walk alone. The medical people couldn't understand the relationship between his anaemia and neuro-muscular problems.
Unlike James, Edwin does not have any problems with his eating, eating is one of his pleasure in life. A lot of tests and analysis has been done, since last year (I think May or June 1995) when TPI was diagnosed by Doctor LIVET from Aix-en-Provence.
When Edwin was diagnosed, I began to look for any information concerning TPI by using The INTERNET. I first tried the newsgroups. It was something like 'a bottle in the sea.' I asked if anybody knows something about this disease. I got some answers that drove me towards a wais server in which I got some articles. In one of them we discovered that the disease could be fatal. By continuing to search, I found Altavista server in which it is possible to formulate requests, and I found the James Stewardson TPI Trust Home Page. As far as we know there isnít any other living TPI children in France and the only cases we know is this family from Lyon.
Edwin began to deteriorate in the middle of December 1995 and was admitted as an emergency case in hospital La Timone, in Marseille, because he couldn't breath alone. He was given a tracheotomy 1 month after his admittance and allowed to leave the hospital at the beginning of February 1996. Unfortunately, he lost a lot of capabilities : cannot eat alone, cannot sit without being held and does not have any precision in his gesture, but his mental development does not seem to be affected.
Because it was impossible for him to go back home, he was driven to a specialised institution in Carqueiranne, close to the family (Pierrefeu 15 km, HyŤres 4 km, Toulon 15 km), who can visit him daily. His life is as normal as possible and he seems to be as happy as possible and can move thanks to an electric chair (he pilots himself) on which the ventilator is installed. All the staff are very kind and because of Edwinís kindness, I think he is their prefered one. After a periode of stabilisation, we were very surprised and happy to see functionnal progress : he can almost eat on his own again, he may pass alone from the horizontal position to the seated position and speak, even with ventilator.
I shall tell Edwin this week-end about his English friends and shall send you all the information we have.
If you would like to contact the Bouchard family, please E-mail:
You can e-mail Remi Bouchard (Uncle of Edwin)