I have been thinking a lot lately about Jasmina Yushkina, a gorgeous toddler from Yaroslav in Russia, who had a heart condition and Down’s Syndrome.
Sadly, the fact that she had DS meant there was little chance – actually, let’s be honest, no chance – of her being treated in a local hospital.
But I met her and her mother Tatiana when the Down’s Heart Group arranged for her to be brought to London and to be treated at Great Ormond Street Hospital. Of course, it involved a lot of fundraising and that is how I came to be involved because I was then the health correspondent for the Sunday Telegraph and I wrote a number of articles about her plight.
Jasmina had two lots of surgery at GOSH and one at the Heart Hospital. In the end, though, she could not fight on and she died on February 22, 2001. She was only six years old.
Penny Green, from the Down’s Heart Group, tells me that she is now buried in Bexhill, Sussex, and that her mother comes over from Russia every year to lay flowers on her grave.
It is so many years ago but there are some stories, as a journalist, that never leave you. Even when you forget the specific times and dates, you remember the sense of who the person was and why their plight had such an impact.
In Jasmina’s case it was partly because she was so sweet and her mother was so desperate to save her beautiful daughter’s life. But I have always remembered her, too, because it was unbearable that Jasmina’s life was treated with such disdain and discrimination.
It is tempting to put this down to Russia and the type of country it was at the time. Let us not forget, though, there were children in the UK with DS who in the nineties were denied heart surgery simply because of this difference in their chromosomes.
There was outrage, of course, when it finally become a matter of public record, lots of mea culpas, and policies were changed as was appropriate in a civilised society.
But how much have we moved on since then? How civilised are we really? Because we have the scandals in places like Winterbourne View, where young people with learning disabilities and autism were brutally treated by members of staff.
Or the sad, sad case of 18-year-old Connor Sparrowhawk, known to his friends and family as Laughing Boy. This is another story that will stay with me forever. In July 2013 Connor, who was learning disabled, had an epileptic fit and drowned in the bath of an assessment unit run by Southern Health.
His death was subsequently found to have been preventable and the inquest (which his family had to fight for) found his death was contributed to by neglect and that there was a series of serious failings.
Not so civilised then?
Just recently, I have become a trustee of a charity, called Mental Disability Advocacy Centre (MDAC), whose mission is to use the law to fight for the rights of people who are too often locked up in institutions, denied an education and abused.
The charity works in Europe, Africa and, more recently, here, where they will be looking at inclusion in education.
What persuaded me to become a trustee? Just to take one example: MDAC and others had brought to the attention of a United Nations Committee serious and systemic human rights violations against girls and women with mental disabilities in the Czech Republic, including forced sterilisation, segregated education and the denial of family rights.
The Czech Republic. Virtually on our doorstep. A member of the European Union.
Or another example, this time from Bulgaria. MDAC has won two cases in the European Court of Human Rights against the Bulgarian Government for detaining people with disabilities in inhuman and degrading conditions within social care institutions.
I mention this, not so much as a plug for MDAC, although every little helps, but because whenever I walk past Great Ormond Street Hospital and I think about Jasmina I remind myself that there is no room to be complacent about how civilised we are.
Victoria Macdonald is Health and Social Care Correspondent at Channel 4 News. She is an award-winning journalist, who has been covering health and social care issues for Channel 4 News since 1999.
Find out more about the Mental Disability Advocacy Centre here
If you enjoyed this blog then please donate a few pounds to support the vital work that DS Scotland undertake.