When Aimee’s daughter, Emily, was diagnosed with Hydrocephalus four days before she was born, she and her husband didn’t know where to turn. Below Aimee talks about the lack of emotional support they’ve received and how hard it’s been to give Emily the same opportunities as other children.
Now is the time to give families like Emily’s the support they need. If you donate before midday on Tuesday 4 December, your donation will be doubled. Donate today.
When a baby is born, it’s a joyful time – as parents and members of the family, you welcome them. You celebrate them. And you feel excited for their future.
But four days before our daughter Emily was born, a healthy, uneventful pregnancy took a frightening turn. A doctor told us, “She’s got water on the brain.” They talked to us like we were fellow doctors, using the term “Hydrocephalus” that meant next to nothing to us.
My husband Dan and I were in tears.
We went home not knowing if our baby would live or what her future would be. We spent that weekend alone then we went back to hospital. I had an emergency C-section and Emily was delivered. Our family didn’t know whether to congratulate us or commiserate with us.
A specialist told us our daughter also had spina bifida, another condition that we didn’t understand. He painted a dark, dire picture of Emily’s future.
Your child’s birth should always be a beautiful thing.
Looking back I feel sad for us, but also angry because every child has a right to be welcomed into the world.
If we’d had some support during those dark days, we wouldn’t have been so shocked and anxious. Our journey as a family would have been easier. This is exactly what Scope wants to do for all families now.
I remember we were sent home from hospital after ten days. We were new parents and we were still in shock. The health worker who came out to us hadn’t cared for a disabled baby. This was the first of many bad experiences – people who were supposed to help you didn’t. They didn’t even seem to care or understand.
Emily is her own person
As Emily has grown up, she’s now 12, she’s shown us what a confident, funny, inquisitive girl she is. She doesn’t want to follow the same path as everyone else. She is her own person.
We want Emily to have the same opportunities as other children.
It’s a constant struggle. We’ve had to fight for everything, even essential equipment like a wheelchair. You understand why so many parents like us experience mental health problems such as anxiety and depression – everything is so much harder than it needs to be.
Now is the time to provide the support disabled children and their families need.
Scope is now offering families like ours a whole programme of support – from the helpline to the online community – with the goal of reaching 59 per cent more families next year.
Please send a generous gift this Christmas that could make all the difference, enabling a family to enjoy their child instead of feeling lost and alone.
For us, Christmas is special because it’s the one day we don’t worry about money or school or the future or what will happen to Emily when we’re not her to care for her.
But the next day those worries start again.
With your support, Scope is out there fighting for disabled children to get the best start in life – and for a more equal future. That gives us hope. Now is the time to support Scope, so please give generously this Christmas.
If you donate before midday on Tuesday 4 December, your Christmas donation will be doubled thanks to the Big Give. Donate today.