Time for me to be a bit serious.
I spy on people via social media. Facebook usually gives me an insight into other people’s private lives. Strangely, people I don’t actually know personally sometimes make for interesting reading. I don’t remember how or why, but I stumbled upon a couple who work as part of the internet radio station Big L (biglradio.co.uk). As an avid listener to Steve and Suzy on Sunday mornings (I can’t and don’t listen to anybody else on the station for fear of my head actually exploding from the exposure to oldies), I vaguely recall Steve and Suzy making good natured jokes about fellow presenter Ellie and her other half Simon, as Ellie was in the last stages before having a child.
Time moved on, and in my Facebook newsfeed I noticed that Simon and Ellie were spending a lot of time in Great Ormond Street Children’s hospital, and so I started to deliberately stalk and read more.
They were not there because of the new baby, Jacob, but for his older sister, Seren-Rose. Seren-Rose is nearly or just 3 years old. After many tests and checks, in the week before the Christmas just gone, she was diagnosed with the ‘Hurler’ or type I version of Mucopolysaccharidosis (“MPS”) (How the heck do you pronounce Mucopolysaccharidosis?). I don’t want to dwell too much on what this all means for the future for Seren-Rose. You can Google the details.
Now, I’ve watched many TV documentaries over the years featuring ‘brave’ children as they have to face tests and attempts to cure or ease and slow the onset of the problems that child diseases and illnesses can lead to. I have always been so struck by the way children just kind of take it in their stride. I guess it’s because it’s all they know, and so they have no ‘normality’ to contrast their experience with. Children are just happy little innocent souls, and this has always made such documentaries all the more heart-wrenching. They never fail to touch me.
The real bravery, however, is in the parents. Unlike an innocent child, they understand what’s going on and what the prognosis is. I really cannot imagine how this feels, but, as a parent, I assume it’s something you somehow pull strength from somewhere inside to go through for your child because of your unconditional love for them. The pain must be unbearable, and I’m sure those reading this that are parents of healthy, lucky, children feel a mixture of relief and then of guilt for feeling that relief. That’s how I feel.
I would guess that having a good network of folks around you, and the support of professionals all plays a part in physically coping. As for mentally coping, it probably helps to befriend other parents facing a similar diagnosis in their own child. I guess.
Damn this. I keep re-reading and re-writing this article. I can’t seem to tap into the right words and construct sentences to convey whatever it is that I’m trying to say. The fact is that I feel like I, we, should do something to help these children. But what? That’s the frustration when one is on the outside looking in.
Genuinely, my heart goes out to Ellie and Simon.
MPS isn’t something you hear people mention when raising money for charities. And that’s not because it has such an unpronounceable name. It’s because it ‘only’ (‘only’ seems such a harsh word) affects 1 child in 25,000, with MPS I affecting 1 child in 100,000.
Hey. One of those children is Seren-Rose.
There is only one charity in the UK that supports research and the parents, and that’s the ‘MPS society‘. I understand that Ellie and Simon have had a lot of help and support from the MPS Society. Simon wants to give back, so he is trying to raise funds in a radio anorak way. He’s doing a sponsored 24 hour broadcast via ‘Big L 2‘. He’s doing it on May 14th/15th, which is nationally, MPS Awareness Day.
Personally, I think that the lovely Big L management (one of whom I’m sure I spotted in a Courthouse in Romford Road recently) should allow this to simulcast on Big L 1. Actually, the whole thing should be publicised by the radio industry news media, including those who won’t accept internet radio as being ‘proper’ radio. Or at the very least, they should chuck a bit into the sponsorship pot. Especially those who have healthy children, he adds menacingly.
The marathon broadcast will be in May, so it’s a while away. It’s far enough away for people to think ‘I’ll do this later’ and then forget. So, what I’d like to ask, please, even if you don’t care about internet radio and this marathon, is for you to just pop over and donate a bit to Simon’s efforts. Just a fiver or a tenner could make a difference. You could do it now. I just have. Go here.
England's England 