There are many programmes on TV, as well as in other media such as newspapers and magazines, that make one think, “That makes my problems seem pretty small by comparison” and this episode of Born To Be Different was not only one of those, it was a humbling experience that went beyond thanking lucky stars and counting blessings.
I hate to use the phrase “these poor children” because despite their pain, anguish and often almost unbearable suffering, they and their families face the daily challenges that each child’s disabilities bring with a joie de vivre and a stoicism that brought lumps to my throat several times and set tears flowing freely.
This series of programmes has followed these six children since they were born and all are now eight or nearly nine years old; there’s Shelbie, Zoe, William, Hamish, Nathan and Emily and just the fact that some of them have made it to this age is, tragically, a blessing in and of itself…
Some of the children were able to tell their own stories, some adorably read from their own pre-written ‘scripts’ in a diary entry format while for others, their parents had to speak for and about them.
Sometimes, it was almost unbearable to watch, but in case you missed it, here’s what happening with the children now…
Shelbie, who has a rare genetic condition which results in severe physical and mental disabilities was shown lying in a hospital bed, tears streaming down her face from the pain she was in. One of the things that struck me most about this scene – and indeed throughout the programme – was how the parents cope; anyone who’s a parent will know that it’s agony to see your child helpless and in pain and to be able to do little or nothing to help it or make it better, and these brave men and women must do this on an almost daily basis.
Shelbie is autistic and prone to seizures and we watched as, in this episode, her illnesses came close to killing her which was one of the most gut-wrenching scenes on TV that I’ve seen in a while. Shelbie has trisomy and when her condition deteriorated badly and fast, her mother Vicky had to decide whether she should be given a potentially live-saving operation which she had just a 50-50 chance of surviving. Vicky’s torment and pain over that decision must’ve been insufferable.
William is also autistic and in addition, he suffers epilepsy and tuberous sclerosis. His chronic hyperactivity affects his behaviour severely and causes insomnia as well as making him prone to episodes of unpredictability that his often exhausted family struggle to cope with sometimes.
William’s parents, Nick and Paula, also have a two-year-old daughter who, thankfully, doesn’t have a disability but Paula has recently been told that she herself has the devastating disease MS. Just how much desperately bad luck and life-horror can one family take? But take it they do, on the chin, much like the other families in this deeply moving film.
“We try and enjoy every day as it comes” Nick said.
“When you have a child like William you go from wondering which university they’ll go to, to wondering whether they’ll live through school.”
And now, as Paula’s own condition will inevitably deteriorate, they must face that trial too… as I said, it makes one’s own problems seem pretty insignificant really doesn’t it?
Then there was Hamish who has achondroplasia which is more commonly known as dwarfism. At the age of nine, he’d just been given a BMX and he loves it but when someone in the playground asked Hamish how old he was, his joy suddenly turned to sadness and he wanted to go home.
His brief meander into ‘normality’ was cut short by a seemingly innocuous question but of course, it’s an issue that is at the heart of Hamish’s problems. Another worry for both Hamish and his family is that they are soon to be moving to a new town and everyone wonders how it’ll affect him; they’ll have to tell a whole bunch of new people about Hamish and inevitably, the stares and nudges will start up again when he’s in a new place…
I have to say, it wasn’t all depressing and gloomy though; for instance, Zoe, who has arthrogryposis – a condition which causes her arms and legs turn inwards – loves dancing and shopping and is an opinionated young lady who ensures that she gets a say about her treatment… and very vocal she is over it too, and good on her!
Zoe’s already had to undergo several painful operations but they’ve enabled her to walk, however, now Zoe and her mum were faced with the decision as to whether or not Zoe should have yet another operation, which, if successful, could mean that she can bend her arms back and put on her own lipstick; a dream she’s had for sometime. She’s a real girly girl and I hope we get to see that happen when/if these children are revisited!
And Emily, who has spina bifida, was a joy to behold when she shyly revealed, “I love being filmed, so that’s the only part where I like having it [spina bifida].”
Emily’s spina bifida makes her doubly incontinent and she’s the only child in her class who has to wear nappies but despite that and countless other traumas, Emily is a charming little girl who, like the other kids, shows extraordinary bravery and resilience.
And finally, the parents of Nathan, who has Down’s syndrome, now have to decide whether their desire for a mainstream education is in Nathan’s best interests or even feasible. We all know how cruel children can be so part of their decision must include the fact that their endearing and adored son may be the butt of playground humiliation and may not be able to cope with ‘standard’ education.
If I’m honest, I normally avoid shows of this nature because anything to do with children suffering affects me deeply but that said, I do hope there’s a follow on so that we can see how these six children get through the next stage of their life and move on – God willing – to the next.
The stoicism of the children and their parents was inspirational and I admire them all greatly and wish them all the very best of luck and truly hope that none of them – including Paula, who’s already got more than enough tragedy in her life – have in any way deteriorated next time we see them.