I should be proof-reading, tidying up, checking what we're going to have for dinner tonight, or editing photographs, but I'm not. This post has been metaphorically burning a hole in my pocket since Friday, and until I write it I can't properly focus on anything else.
This is Sergey*.
I met him and his mother when I was at a riding centre for the disabled in Moscow. He has, amongst other things; cerebral palsy, bilateral spastic diplegia, and a very rare chromosomal disease. It's the last that is the real problem and as a result of it, he's slowly fading away. There seems to be no help available to him here in Russia, and his mother is desperate. Desperate enough to approach a complete stranger with no medical knowledge or expertise, who doesn't even speak the same language, to ask if there is any way I could help. She wasn't looking for money (specifically), but instead for any information she can find on where to turn for assistance in treating Sergey's condition outside Russia.
Since I had a Russian friend me with me, we were able to exchange email addresses and she has sent me a translation of his medical diagnosis.
Now. I know that there are millions upon millions of children out there who need help. I know that Sergey is just one amongst them, and that they should all have a shot. I'm told by others who are more experienced than I am at dealing with charities that it's possible to tie yourself up in knots over one child, when in fact you should keep the bigger picture in mind.
I know all that.
But I've met this little boy, and his mother. I've seen first-hand his condition and smiled with him as he was helped to ride a pony and undergo therapy which - whilst it can't cure his condition - can at least ease some of the symptoms. And I can't forget the quiet desperation in his mother's voice as she repeated for what must be the thousandth time the details of his diagnosis to yet another complete stranger who might - somehow - be able to help.
So I'm trying, via friends in the medical profession back home, to see if there is anyone I can put her in touch with, and since I have this blog, I'm trying here too.
Please, if you know of anyone who may have contacts in the area of treating chromosomal diseases, ask them to get in touch with me via the email listed on the 'contact me' page of this blog and once I've checked out their credentials I will forward them Sergey's translated diagnosis and put them in touch with his mother.
Thanks for reading.
*Not his real name
I'm truly scratching my brain. Possibly she could reach out to Great Ormand Street in London and see if they have any charitable program. Try googling them and looking for the genetics department. Maybe she could at least get someone to look at his papers and consult over the phone or by email?
ReplyDeleteWish there was some way I could help - will have a think
ReplyDeleteFancy and Muddling; thankyou ladies, for thinking about it and for your suggestions. x
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