Tuesday, 2 April 2013

Disabled Children Need Your Money. Please.

To get straight to the point: our friend Ryan is doing a charity bicycle ride this week to raise money for East Anglia's Children's Hospices (EACH). As regular readers of this blog will know, EACH mean a lot to us and to many disabled and life-threatened children. We'd be very grateful then if you could sponsor Ryan. It doesn't have to be much: a fiver will do. Thank you.

Here's the link:


To waffle on a bit, below are a few words from Ryan himself about why he's doing it. I'd like to point out here that he's not a cyclist and he's doing this all on his own. So as well as being a rather wonderful and courageous thing to do, it's also quite foolhardy. Especially in this weather. So you never know - he may fall off and die or something and then get loads more donations and national publicity. Best of all, you can say: "You know that cycling bloke who was found half eaten by foxes on the side of the A1 the other day? I sponsored him." It can be your little claim to fame.

In case anyone without a sense of humour is reading: I don't really want Ryan to die. It's just a joke. Besides, I want him to live so he can do this every year. Every single year. Until he expires from old age and exhaustion.

Within his piece he says some very nice things about me and Shannon. They are, of course, all true. And below his piece is something I wrote about EACH last year (just in case you need to know a bit more about what they do and what they do for us).

From Ryan:

I don't really enjoy the company of other cyclists. Conversations with them are usually awful. I can understand why they talk about things like speed and mileage. That's fine. I always like to hear about achievements. But as soon as the conversation turns towards anything technical or brand-related or "sustainable", I switch off.

So I don't want to talk too much about actual cycling while I've got this blog. It'd bore all of us.

I want to talk about other things. Like why I'm doing this trip.

I can't think of a family I admire more than Paul, Shannon, Maggie and Alice. Given all the difficulties that surround Maggie's disability, you'd understand if her parents were too preoccupied to think so sharply about the position they're in. Or to stay as rigorously in touch with the rest of the world as they do. Or to make so much time for other people. Yet not only do they achieve all of this, they so often make it look easy too. It obviously isn't.

Right up there, too, is their attitude towards the world of disability. We all know that it's a world of sadness. But thanks to them, we know that it's also a world of sanctimony, incompetence, indifference and laziness. It's excellent that they both get angry and react against all of these things. Because these things are genuinely fucking scandalous.

Reading this blog makes me angry, too. Angry that charities such as EACH have to exist, and angry that they get no government funding.

But I also find it heartening to understand what EACH mean to families like this one. On a daily basis, they improve the lives of countless children, and they improve the lives of all their parents too.

Whenever I've thought about that during my training for this trip, it's cheered me up. Despite the freezing conditions. And the knee pain. And the arse pain. And, to be honest, the protracted period of depression with which a lot of my training has coincided.

Please donate. If you can.

All of us will be grateful for every last penny.


How EACH helps us:

EACH (East Anglia’s Children’s Hospices) supports families and cares for children and young people with life-threatening conditions across Cambridgeshire, Essex, Norfolk and Suffolk. They provide care and support wherever the family wishes – in families’ own homes, in hospital or at one of their hospices in Ipswich, Milton and Quidenham.

They are a registered charity (no. 1069284) and need to raise around £4.8 million in public donations to deliver their services this year. This amounts to more than £13,000 a day, every day of the year.

We first heard about EACH (Quidenham) from a nurse at the hospital when Maggie was still in intensive care. I remember thinking then that I’d never be happy taking her there. I didn’t want her mixing with disabled kids because I didn’t want to accept the fact that she was disabled. It’s called wishful thinking.

The first time we took her there I was overwhelmed with sadness. By crossing that threshold it was almost as if we were surrendering her to disability. Everyone was very kind and understanding but I despised them all, including (and maybe especially) the kids. As far as I was concerned Maggie shouldn’t have been there.

Over time, those feelings passed. This was partly as a result of us slowly accepting Maggie’s condition but mainly as a result of realising how fantastic the people at EACH are. They have only ever had Maggie’s best interests at heart. Ours too. More than anyone else we have to deal with, they understand what our lives are like. Not just the day-to-day stuff, or things like the lack of sleep, but the pain and sadness that comes with having a disabled child.

On the surface, what EACH gives us is very simple: they give us a break. They take Maggie and allow us to have a few days and nights off. But more than that – much more than that – they make Maggie’s life richer. The people there aren’t just carers, they’re professionals who are dedicated to making disabled kids’ lives better. So Maggie gets physiotherapy, cognitive support, music therapy, play therapy and all kinds of good stuff that will enable her to have a better chance in life. She also gets love and care and undivided attention.

In this respect, EACH has been, I’m sad to say, more of a friend to us than quite a few of our real friends. A consequence of having a disabled child is that you become isolated. Not simply because of the practicalities associated with caring for a child with a disability, but because people don’t seem to want to know you. Or they just forget you. But with EACH we get help and support and understanding, both at the hospice and here at home when they come out to give us respite or to babysit. As a result of this, Maggie has grown very fond of many of the people there. So much so that these days she even looks forward to her visits.

One of the things I like about EACH is its purity. It’s a charity that looks after disabled kids and their families. Kids and families who, through no fault of their own, lead extremely difficult lives. (I should point out here that there are families who use EACH whose lives are much more difficult, and sadder, than our own: it’s not called a hospice for no reason.) Which is why it’s almost scandalous that it’s a charity, rather than an essential service. If we’re talking about the most vulnerable people in society, the most deserving even, then I’d have thought that disabled children would be the ones most in need of care and attention. I’d think that, by the way, even if I weren’t the father of a disabled child. Yet EACH has to fight it out with all the other charities out there.

Here, again, is the link to Ryan's Justgiving page:



  1. Excellent post and grand endeavour for a great cause (which deserves far more public support) - best wishes to you all.

    (Hope that is a high-vis waistcoat and britches that Ryan is wearing.)

  2. I have sent £10 plus gift aid.I came up as anonymous.I thought I had left Ryan a message wishing him well!I totally agree with you that hospices should not depend on donations.Scandalous.Barbara(N.Wales)

  3. Thank you Huw. And thank you Barbara. Much appreciated.

  4. Hey, I just stumbled across your blog. Wanted to say thanks for keeping it and sharing your perspective with the world! Also, if you're interested, check out this great site full of cerebral palsy resources. Hopefully some of them will help make your life a little easier! The CP Family Network facebook group is also a great way to connect to the CP community, if you're interested. Check it out! Good luck to you and your family :)

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