My three children are now young adults, and between them they have around 25

diagnosed conditions. Toby, my middle child, is the one who has the most to

cope with in life. He has a condition so rare that he may be the only known

person ever to have had it, and in his early life he was so poorly that he

wasn't expected to survive. He and I together spend most of his first six

years living in hospitals, and I lost count of the number of times we were

on the brink of losing him. 

He's 22 now, and due to my own more recent terminal cancer diagnosis, he now

lives in a fabulous care home very close by, and he is doing remarkably well

and he is very happy. He is still a huge and integral part of our family and

we see him several times a week. He remains profoundly disabled but that has

very little effect on his quality of life. He is one of the happiest people

I know with a real skill at being able to milk the most fun out of every

moment. 

He is non-verbal, and he has severe learning disabilities, his cognitive

skills are equivalent to a two year old child. He also has severe autism,

behaviour that can challenge, several physical impairments and some very

complex medical issues too. However, to compensate, he has somehow acquired

some superpowers, and one of them is that he has the ability to bring out

the best in nearly everyone he meets. 

I've been writing almost since I was first shown how to hold a pencil, but

I've only been blogging and writing seriously for the past five years, when

I was first diagnosed with cancer. I started a blog, Coke Floats & Chemo,

and initially I was careful to never write about my children at all. Then

Toby became suddenly very poorly and he was back in hospital and yet again,

we thought we might be losing him. I wrote about it in the blog, and

hundreds of people all over the world wrote back and held him in their

hearts with love until he was better. 

When I found out that the cancer treatment I'd had, had not been successful,

that the cancer had spread and that I probably had about two years left, I

immediately knew what I wanted to do instead of having a bucket list. I

wanted to do whatever I could to make the lives of the next generation of

special needs families significantly better, and to help the statutory

services who support our families to understand better the sort of support

our families needed. 

Firstly, I wrote a book "The Special Parent's Handbook", jam-packed with

everything I'd learnt along the way in terms of making life easier for

special needs families. I was thrilled when it became an Amazon Number One

Best Seller. Although it was written for parents, soon health care

professionals and teachers were reading it too, and before long the

invitations to speak at conferences, seminars and training events started

rolling in. 

I now run Workshops for parents and staff as well as writing and public

speaking, and I'm also now an Advisor to NHS England in Learning Disability

and Autism. Additionally,  I'm the World Health Innovation Summit Ambassador

for Learning Disabilities and Autism and their families. At the very time I

should be winding down, putting my house in order, and dealing with a

terminal cancer diagnosis, life has instead taken on a completely new

direction. Best of all, I'm having ongoing treatment to prolong my life that

seems to be working well, it's now nearly 4 years since I was told I had

about 2 years left. 

I was absolutely delighted when NHS England asked me to curate their own

Twitter Account @NHS . I am so looking forward to the week, it's very

exciting although it's also a huge responsibility and that's a bit daunting.

I want to use the week to the best of my ability to champion the causes of

our community, and also to challenge people's perceptions of others who have

an intellectual or neurological impairment. 

If next week, because of  something I've tweeted, somebody somewhere stops

and thinks in a more positive way about young people like Toby, I will have

done a good job. This is about our whole community, all our families and all

our vulnerable family members.  I so hope I don't let us down.