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Update on my plea to NHS England to save my life

Posted on Apr 30, 2015 | 23 comments

Update on my plea to NHS England to save my life

Today, I received the call from my doctor that I’d been waiting for, that all of you – my friends and family especially – have been waiting for: My second transplant has been approved by NHS England. The past six weeks have been some of the darkest days of my life. That so many of you got behind me, including hundreds of total strangers, was completely overwhelming. I am very grateful. But, the truth is the real heroes here are my doctors, who pressed for this treatment despite it being expensive and only given in very rare circumstances. They toiled behind the scenes on my...

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Happy Birthday May – You are six!

Posted on Apr 23, 2015 | 7 comments

Happy Birthday May – You are six!

Like the title to a Winnie the Pooh book, my little half-brained baby is now a 6-year old half-brained beauty. And let’s all take a minute to pause there. SHE IS SIX. That’s nuts. I feel old. But, you know what? With everything going on the last few years, I don’t mind feeling old or the idea of growing old, especially with such a cutie by my side. And how incredible it is that, not only are we dealing with having a child this brain damaged but we enjoy her, our lives and our future. Having said that, here is the thing… May hasn’t actually made a lot of progress...

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And finally… some good news!

Posted on Apr 8, 2015 | 8 comments

And finally… some good news!

Several weeks ago, I published a post entitled: This is what being disabled and on the housing register looks like. I began: A mother with leukaemia. A five-year old daughter so disabled she can’t even throw an arm around the shoulders of someone carrying her up the stairs to her flat. Over two years on the housing register and no chance of even being shortlisted for a property. This is the reality of being disabled and living in housing completely inadequate for your needs. That was five weeks ago. This week we were shortlisted for a property! We are thrilled because, even if we...

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The video that changed everything

Posted on Mar 12, 2015 | 8 comments

The video that changed everything

Last week, ITV filmed May and I in our housing showing the reality of disabled housing. As we filmed, the reality of our lives wasn’t just highlighted in the piece, but starkly apparent to me. Only an hour later – before it even aired – we received our first contact from Lambeth council. I had to carry May up the stairs; we have four flights at various points in the house, inside and out. In the clip below, you can hear me puffing as I heave her up those stairs. They asked me hard questions, emotional questions that cut to the heart of what our lives are like. Not all of it...

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Disabled and without a home: what happened next

Posted on Mar 5, 2015 | 0 comments

Disabled and without a home: what happened next

On Monday, I published a post about our housing situation. The media picked it up and it wasn’t long before the Allocations and Verifications Team Manager for Lambeth left me a voicemail message.  In it, she asked me to email some documents over to start the process to move us to the higher band. She said she’d follow up with an email explaining what was needed and where to send it. That day? No email. The next day? No email. Wednesday, again. No email. Because, that’s the way, isn’t it? That’s exactly the problem. We can talk about the lack of housing,...

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