So Sad About Us

“Together we could break this trap
We’ll run till we drop, baby we’ll never go back” (Bruce Springsteen)

You’ll have seen in the media recently that Hollywood producer Gordon Gray’s daughters, Charlotte & Gwenyth, were diagnosed with a variant of Late Infantile Batten Disease.

Their response was “Cure Batten, the Charlotte & Gwenyth Gray Foundation to Cure Batten Disease”

(I don’t presume to speak for them so please use the link above to read their story)

The impact of Mr Gray’s job was that many Hollywood stars donated money and tweeted about Battens.

It seems a tragic event but a potentially helpful ally in the fight against Batten Disease so I’m surprised at some responses to the news.

Firstly there is anger and hatred. I’ve seen replies to celebrity tweets criticising the celebrity themselves, in those cases I think it’s fair if we all agree to ignore the complainer. If you’re using a request for help for two terminally ill kids as a chance to tell someone you didn’t like their sitcom we don’t really need to waste our time on you.

More surprising were some ungracious comments by those already in the Batten community.

Of course it’s a terrible tragedy, Charlotte & Gwenyth look like beautiful children and they’re on a difficult road, but is it a bad thing to have this ally in the fight?

We know rarity is an issue. There’s little knowledge of the condition and a relatively small amount of people affected, so big companies haven’t invested money into research for treatment or cure.

The Cure Batten team look like achieving this. Is that bad? Should we resent the fact Mr Gray used his contacts to help?

When Ellie Mae & Caleb were diagnosed I reacted by asking everyone I know to support, and they did. They provided practical support for the kids and financial support in sponsorship. I used my contact list, such as it is, and when Taylor Swift returns my calls I’ll bug her for support too. Should I feel jealous that Mr Gray might already know her? (Obviously I do a little bit but that’s a separate issue!)

I’ve seen suggestions the Cure Batten team are only interested in curing the variant Charlotte & Gwenyth are fighting. It’s an interesting claim because on their site they refer to research to save the lives of all children devastated by this disease. I’m sure if they found a cure tomorrow their children would be first in the queue but is that so wrong?

If I funded a cure Caleb would get it first but your kid would be second.

With regard researching one variant isn’t it like saying if someone cured breast cancer no-one with bowel cancer would benefit? Of course they would, curing one would lead to a better understanding of the other. The variants aren’t identical but increased knowledge of the overall condition would benefit all. It would surely be the same with Batten’s.

So what exactly is the issue?

This disease is devastating and we all respond in different ways. We give our kids the best of everything, cram a lifetime of holidays into one summer, rattle a tin in front of complete strangers or cycle to the Arctic on a tandem.

But the one thing we mustn’t do is compete.

Batten’s doesn’t care who’s kids are cutest (mine), how many are affected, who raises the most money or who can grieve the longest. We mustn’t compete at these things because truthfully you will never understand how losing Ellie Mae impacted me just as I will never understand how your fight impacts you, it’s a personal, individual thing. But it’s not a competition.

Yesterday Caleb and I were having a conversation with a Knight of the Realm, just another day in the life for us! Explaining our situation I said, “You may have heard about the Hollywood producer..”

It brought instant recognition and understanding. He asked “What do you want me to do?” I said “Retweet me”.