We knew we had to share our story

Dan and Aimee White, parents of Emily (13) who was born with spina bifida, share their journey as Storyteller for Now is the Time campaign and call for a Minister for Disabled Children and Families.

When you first receive the news that your child will be disabled, you expect to be given all the support needed and a system will be there to guide you, so you won’t feel so isolated and sucker punched. The reality is that this does not happen. There is a void where charities, benefits, support groups and aftercare are not easy to reach.

So, when Scope called last year and asked us to be the face of their new campaign, Now is the Time, and share our story we knew we had to do it. The campaign asked people to sign a petition to call for a Minister for Disabled Children and Families to be in post. Last week, Emily, proud in her wheelchair, went to Downing Street to hand the 40,000 signature strong petition in.

To speak to camera was cathartic

When the campaign launched last year, we played to our strengths, honesty and passion. The team from Scope visited us all at home to make a film. We sat talking about Emily’s first hours on earth and the lack of support. To speak to camera was cathartic because we wanted the country to know that, as a close community, we love our children dearly, they are perfect, and are contributing.

A teenage girl sat in a wheelchair, punching mats that are being held up by a lady. A man in the background smiling, recording the action on a phone.

My beautiful wife was invited to speak, by Scope, to an audience at the Natural History Museum, once again sharing our story, using our past to change the future. The message of necessity was spreading, with parents backing us on this campaign.

Our community was uniting

The online petition soon started to gather numbers, and we relentlessly and without social media mercy asked the people to sign and share. Old friends such as Matthew Wright of Talk Radio and more gave us the opportunity to take it to the masses. However, the real stars of the campaign were simply parents like us, beautiful people who have been there for us and vice versa. Our community was uniting, wanting, and demanding.

A Minister is needed to help support new parents and young disabled children everywhere. Someone would be there to link together all the hidden support. To make it easier to access information, to make services prominent and be a voice for families.

If this minister had been working in Government twelve years ago, the early days of our family life would have been different. We could have concentrated on parenting rather than thinking society had shut us out.

The message is being heard

We, as a family and with Scope have travelled and talked countrywide to all who would listen. Last week, Emily, proud in her wheelchair, went to Downing Street to hand the 40,000 signature strong petition in.

Sharing our story for this campaign has had an impact. Over the last few months the Government has added several new ministers to the cabinet, for new, socially minded causes. It seems the message of supporting people through difficult, avoidable times in their lives is apparently being heard within Westminster. Surely, logically, our representative would be next.

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