Dear Health Secretary,
When I look back at my life with Heidi so far, I feel blessed and lucky. First and foremost, she’s my beloved daughter – she just happens to have Down’s syndrome too.
SHOCKING
As the law stands currently, I could have terminated my pregnancy up until the time she was born. I find that shocking as I feel it’s demeaning her life – like she doesn’t count. The current law is rife with negative connotations for people with Down’s.
I have to admit, when I gave birth to Heidi I was in shock.
I’d turned down a screening test when I’d been pregnant with her to see if she was likely to have it. I thought it wouldn’t matter to me but the reality was different. She was born on 3 July 1995 weighing 6lbs 13.5oz and the moment I saw her almond shaped eyes, I knew she had Down’s syndrome.
I was devastated and angry. I remember thinking that evening that she would never get married or have any other important milestones. I look back now and realise what an idiot I was – there are no guarantees that any child will reach milestones.
Heidi had a hole in her heart that they monitored and we were allowed home when she was a few days old. But I still couldn’t bond with her and we both struggled. When she was a month old, we took her to hospital and they discovered the hole in her heart was far bigger than they thought. She needed an operation as she was in heart failure. Her life was hanging in the balance and it was then I completely fell in love with her and realised how desperately I wanted my daughter to survive.
Fortunately, after the operation in September
1995, she went from strength to strength. We were given incredible support with physiotherapy and speech therapists and she started walking, holding onto furniture, in February 1997. She was able to walk unaided a few months later. When her younger sister Suzie, now 23, started talking, Heidi was determined to not be left behind and started talking too. At five she went to school and loved it. She had so many friends and was incredibly popular. As Heidi got older she got three GCSEs in English, French and RE. She left school and went to college, getting NVQs in hairdressing and customer service. Her graduation ceremony when she was 20 was another big milestone. It was wonderful hearing the cheers as she went up to get her awards.
INDEPENDENT
After college Heidi got a job in a hairdresser, where she stayed until last year when the pandemic hit and the salon shut. When she graduated we looked into her getting her own flat, where support workers would visit daily. She loved the idea of being independent, although I was nervous. The first night she was there I didn’t sleep at all, but when I called her the following
morning she said, “I’ve never slept better!”
In October 2017, she found love. I have a relative in Weymouth and he knew a boy called James who also had Down’s syndrome. We introduced them online and Heidi and James spent weeks messaging and talking over Facebook. They decided they wanted to meet, so I drove to a halfway point between Coventry and Weymouth. Apparently James was so smitten that on the way back he was already telling his parents they were going to get married! After that they both learnt the train journey between Coventry and Weymouth and would visit each other regularly.
In December 2018, they got engaged – with James getting down on one knee in Heidi’s favourite restaurant. She was so happy that she was crying as she said yes. They got married last year on 4 July. We’d planned a big wedding with 220 guests but with Covid we could only have 30. But it was the most beautiful day imaginable. There was a lump in my throat as she walked down the aisle on my husband Steve’s arm. It was the moment I’d feared would never happen, all those years ago on the night that she was born.
RESPECT
Heidi and James live in a block of flats with other people with additional needs and they have support staff. But they’re independent and happy. And now she’s challenging the law and demanding the respect that she deserves.
I wish I’d known more stories like Heidi’s when I had her. I think because there’s so much negativity around Down’s syndrome that makes us so fearful about it. But look at her and all that she’s achieved – this is a life to be celebrated! I don’t know what her future holds, sadly she can’t have children as it would put too much strain on her heart. But equally I don’t know what the future holds for any of my children. And I can tell you, she’s not the trickiest of them! She’s just a young woman who’s in love, has a job and has got married. My daughter has a rich and fulfilling life – the law needs to change. Her life counts every much as anyone else’s. It shouldn’t be that she would have been disposable up until birth. And we need to get that message out there and open up people’s minds.
Yours faithfully, Liz Crowter
LOOK AT HER AND ALL SHE HAS ACHIEVED – THIS IS A LIFE
TO BE CELEBRATED