Thank you

Joseph and ColetteWhilst feeding Joseph at lunch time I noticed an appeal on telly that made my heart leap.  It started off with Zinedine Zidane kicking a football against a steel gate and every time the ball hit the gate, the ball fell to the ground.  The voice-over said (in my best French/English translation): ‘Leukodystrophy paralyses many children and finding a cure is difficult’.  For the last kick of the ball, Zidane kicks the ball so hard it bursts through the steel gate, the appeal ended with the voice-over saying, ‘but Leukodystrophy is not unbeatable, help us find a cure’.

This was an appeal by ELA (European Leukodystrophy Association) one of the charities for which we are raising money.  ELA is huge here in France and they have Zidane as patron.  Once a year there is a big fundraising effort, something like ‘Comic Relief’ in the UK and loads of celebrities take part raising money for the charity.  I was quite moved to be honest, there I was feeding Joseph and an appeal for donations to find a cure for my little man (and many others) is going on.

It’s wonderful to know that the profile for Leukodystrophy is growing and thanks to all of you who have read this site and donated very generously, you too are more aware of what this horrible illness is about.  Knowing that there are combined efforts of raising money for medical research into finding a cure is our only hope.  When you’re told that your child has an incurable progressive degenerative disease you just don’t want to accept that this can be possible, certainly not in this day and age.  Thank you, each and every one of you, for helping us keep some hope.

Joseph in his bed frameJoseph is doing well – he has had a fairly heavy week of various sessions (physio, eye specialists, corset seat review/check, psychomotricienne). He was tired today and he enjoyed having a quiet day at home (so did I).  All his therapists are pleased with his current progress – his reactions are better, his interest in his surroundings and presented stimuli is much improved and the muscles in his eyes are working better (they’re not wandering off in different directions as much).  Long may it continue.

One of the problems with his condition is that he can make progress for a few weeks and then have a lapse where he loses the ability to do things. He will keep a bit of that ability but he usually needs to re-learn or start over again. For example, when he was about 5 months old he could lie on his tummy and do mini press ups, putting his hands underneath his chest and pushing himself up.  He can no longer do this.  If we put him on his tummy now, the most he can do is turn his head from side to side (if he has the energy) and his body remains flat to the ground.

The good news for now is that the periodic dips or lapses are currently becoming less frequent and he is consistently in better form for longer spells which is fantastic and makes life for all of us so much more bearable.

Thanks for reading.


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