Cruel. Uncaring. A puncture on the NHS … These are just a few of the insults addressed to the brave mom who just won a huge win at the hospital, claiming that she would have aborted her son with Down syndrome if she had been screened.
While the legal process triggers a national debate – many people applauding the mother's honesty in raising a child with the disease – a mother of a 12-year-old girl with Down syndrome gives her verdict .
Hayley Evans, a mother of three, lives in Bridgend Wales with her husband Steve and three children, Hollie, 12, Poppie, eight, and Lillie, four.
"I got pregnant with Hollie at age 20 and the blood test revealed that I had a 647 chance that she was suffering from Down syndrome.
Due to my age, I was not offered another test, but I would never have aborted anyway. I know too many people who can not have children, so I consider each child a blessing.
Hollie was born at Christmas 2007 and on New Year's Eve, I was in her room tidying up all her new clothes when the pediatrician rang to tell me that she was suffering from Down syndrome.
At 20 years old and a new mom, I knew nothing about Down syndrome and I had never met anyone who was affected.
After googling the situation and receiving negatives, I was shocked, devastated and rather scared by what the future was reserving.
When Steve and I went to the hospital to see the doctor, this one looked down on Hollie and said, "This one has slipped into the nets."
I was so furious that I went out.
It's hard to see other children go through important milestones
When Hollie was young, we visited friends and family and watched their children go through important milestones before her. It's hard not to compare.
She did not start saying the words until she was almost three years old – but she knew sign language at the age of two.
She did not start walking until her fifth birthday and it was hard to see her with her friends, who were circling around them as she dragged herself in the furniture. But I knew that she would eventually get there.
That's why, despite all that we've gone through, Edyta Mordel winning the win really boils my blood.
The NHS is subject to a lot of tension and I think it's just selfish.
I hope that the child will not know later what his mother did.
Another mother responds to the payment decision
Jacqui Hicklin, 40, who lives in Gloucester with her husband Steve and is the mother of five-year-old Sienna and three-year-old Léonie, said:
"The news that Sienna was suffering from Down syndrome was brutally transmitted by a midwife in the community, nearly 24 hours after birth.
I was shocked with shocked, looking at Sienna to see if I could see him too. I was full of fear of the unknown, but it makes me so sad to see a mother sue the NHS because she has a child with Down syndrome.
She says it's a terrible thing to have a child with Down syndrome, which is a damaging message.
I'm not saying that everyone can look after a disabled child and I'm sure there are some who could not and it's their personal choice.
But the NHS saves so many lives, including my daughter's, and it makes me angry to get some money for it. "
Quit my job to help with incontinence
The hardest thing for us is that Hollie is still incontinent because of Down's Syndrome and she still has to wear diapers.
She started school in a regular elementary school, but had to leave the third grade, at the age of seven, because the school could no longer "meet her needs."
She went to another nearby school and I was really worried that she was being bullied, but the teachers and students were amazing.
The kids would even say to the teacher, "I think Hollie was in the bathroom, I smell Hollie" and that did not bother them.
Despite this, I had to give up my job as a caregiver because I could be called to school at any time to deal with an explosive mess.
If she had not been to the bathroom for a while, it would be so bad that I should take her home for the shower.
When she reached the secondary age, we decided to send her to a specialized school because she would have been the only one in this school to wear diapers, which would not be fair for her or for the other children because she did not always know she was and would be happy enough to stay in a dirty diaper all day.
Changing a 12-year-old child on the floor of public toilets
At home, Steve and I change it on a special changing table, but it's really hard when we're outside and there is nothing to put the older child.
I carry a garbage bag to put on the floor of a disabled toilet to change it or to make it stand up, which is difficult.
Then there are sleepless nights. Children with Down syndrome do not produce the melatonin needed to feel tired and therefore do not give up at bedtime.
She is now taking medication for that, but she will wake us up anyway at 5 am on weekends.
Down syndrome hid Hollie's cancer
Down syndrome can also mask the symptoms of a more serious illness – as we found at our expense.
Hollie was constipated from three months, which doctors attributed to the disease, and she appeared with a rash that they said was a rupture of the blood vessels.
When she started crawling, she was covered with bruises. Once again, he was rejected as normal.
At the age of 19 months, we took her swimming and people were looking at us as if we had hurt her – she was black and blue – so we took her directly to a new operation.
A blood test showed she had leukemia – which is more common in children with Down syndrome – and she spent four months in Cardiff, where she was taking chemotherapy. Steve then worked as a glazier near Swansea.
What is Down syndrome and how many babies are born?
- Down syndrome, also called trisomy 21 or trisomy 21, is a genetic disorder that means that a person is born with 47 chromosomes in his cells instead of 46 and can lead to a range of learning difficulties.
- People born with the disease almost always have a physical and intellectual disability
- Each person with Down syndrome will have different degrees of learning difficulty, including slowing down the learning while sitting, standing and walking
- About one in 10 children with Down syndrome also has another illness, such as ADHD or the spectrum of autism.
- There is no "cure" for Down syndrome, but there is support, such as access to health specialists and developing therapists.
- People with Down syndrome are more likely to have certain health problems, such as heart problems, hearing and vision problems, and thyroid problems.
- Every day, about one in every 1,000 babies has Down syndrome and in the UK, two babies are born with this syndrome each day. Nearly 40,000 Britons have the disease and most of them are growing up to lead independent lives.
Some days, you want to give up
Hollie has been in remission for almost 10 years, but her previous leukemia means that she is more likely to get cancer in the future, which is a constant concern for us. We dread the annual blood test.
Living with a disability can be difficult and some days you feel like giving up because you can not fight for them anymore.
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Just this week, I was in tears because I felt so helpless in her bowel condition, which left her in such pain and frustration.
But the good days are more than the bad ones and we would not change anything about Hollie. In fact, life would be very boring without it. "
It would not change anything.