Willington mother tells of her fate to have son with Down's Syndrome

Blake Lee

Willington mother tells of her fate to have son with Down's Syndrome

Willington mother tells of her fate to have son with Down's Syndrome

First published in News
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A CARER who has dedicated her life to helping adults with learning disabilities said it was fate that her son has Down’s Syndrome. Heather Carr tells Duncan Leatherdale how she will use her son Blake to change the public’s view of the disability.

WHEN she was 14 weeks pregnant, Heather Carr was told her son would have Down’s Syndrome.

The option was there for Heather and her partner Simon Lee to abort the pregnancy, but it was not something the pair from Willington, County Durham, even considered.

“No-one told me I should not have him but I know for a fact that if it had been somebody else who was given that news, Blake would not be here today”, the 30-year-old said.

“I knew the potential he could have, there was never any question that we wouldn’t want him.”

Heather has spent the last ten years working first as a support worker and latterly as a manager for Mencap.

The Northern Echo:

She understands the challenges people with disabilities and their families face, but more importantly she also knows how to overcome those difficulties.

She said: “People said having a child with Down’s Syndrome would be a lifelong commitment but my view is that all children are a lifelong commitment, Blake would be no different.

“It remains to be seen what he will be able to do but it is certainly my aim to enable him to live as independent life as possible.

“I want to use Blake and his story to educate others about just how much people with these sorts of disabilities can do.

“Just because he has Down’s Syndrome there is no reason he can’t live a full life, be independent, get a job and enjoy himself.

“I will do everything I can to make that happen for him just as any mother should for their child.”

Now two-years-old, Blake is a smiler who instantly melts hearts.

Heather says: “Everyone who has met him just falls in love with him, he is such a little character and is so happy.”

Blake has already endured a turbulent start to his young life.

He was born six weeks prematurely after doctors noticed he had not grown between scans.

Heather says: “I went in for a routine scan and was told he would have to be delivered as soon as possible, it all started there.”

He weighed just 3lb 5oz and was found to have two holes in his heart.

Blake underwent an emergency operation to save his life when he was a month old at the Children’s Heart Unit in Newcastle’s Freeman Hospital before spending the following two and a half months in the special care baby unit at Darlington Memorial Hospital trying to gain weight.

He then needed a further seven-hours of surgery to repair his weakened heart before eventually being allowed home.

Blake has also had problems with his sight and hearing and suffers from sleep apnea and low muscle tone.

Due to his health problems his development has been delayed and although he is now two he is still not able to sit, crawl or walk.

Heather says: “With the help of the children's heart unit and the operation Blake has had he now has more energy to help him be more active and we are hoping this will help him achieve these things.”

Before his last surgery even the act of rolling over left Blake breathless.

Now he is a lot stronger and is undergoing physiotherapy to help him develop his movement.

Heather says: “People said it was fate I had Blake because of my job, because I knew not to give up on him and what he could achieve.

“It might be a worry for other people but I know his potential and will push him to have the best life he can have.

The Northern Echo:

“Some people think people with Down's Syndrome will have to live with their parents for their whole lives but I’m going to strive to make him live independently.”

To say thank you to all those who helped in the treatment of Blake, Heather and Simon will hold a fundraising night at Hardy’s Bar in Willington on Friday (April 25) in aid of the Children's Heart Unit Fund at the Freeman Hospital.

The event will start at 8pm with attractions including a disco, karaoke, magician and live singer provided by Hardy’s bar and raffle prizes donated and local businesses such as the Spectrum Leisure Centre, Hair Lounge and Walton’s Butcher.

They are also planning a family fun day to be held at a future date at the Spectrum Leisure Centre in Willlington.

About one in every 1,000 babies born in the UK will have Down’s Syndrome and there are around 40,000 living with the condition.

It is caused by an extra chromosome that occurs at conception.

Comments (3)

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11:08am Fri 25 Apr 14

CathyBe says...

It's great to have a positive story about Down Syndrome in the papers! He looks like a lovely little boy. I have a daughter with the condition and she is fab too and we have a great life with her and our other two children. There are worries of course, especially with the Government's attitude towards disability, but hopefully that will change again in the future. I do wish Heather and her family all the best- Heather if you read this do you go to ECCDS at Newton Aycliffe? It's great.
It's great to have a positive story about Down Syndrome in the papers! He looks like a lovely little boy. I have a daughter with the condition and she is fab too and we have a great life with her and our other two children. There are worries of course, especially with the Government's attitude towards disability, but hopefully that will change again in the future. I do wish Heather and her family all the best- Heather if you read this do you go to ECCDS at Newton Aycliffe? It's great. CathyBe
  • Score: 5

11:17am Fri 25 Apr 14

Voice-of-reality says...

Though a seemingly admirable idea to try to change perceptions, does not the story then go on to further justify the preconceptions that many have. Thus, whilst the story notes that ‘Just because he has Down’s Syndrome there is no reason he can’t live a full life, be independent, get a job and enjoy himself’ it goes on to state that ‘He has problems with his sight and hearing and suffers from sleep apnea and low muscle tone. Due to his health problems his development has been delayed and although he is now two he is still not able to sit, crawl or walk’. Surely, the latter quote rather implies what the problems of later life will be and whilst the mother may well strive ‘to make him live independently’, is this really a realistic prospect? Though I admire the fortitude of the parents it is not a course of action that I would have taken.
Though a seemingly admirable idea to try to change perceptions, does not the story then go on to further justify the preconceptions that many have. Thus, whilst the story notes that ‘Just because he has Down’s Syndrome there is no reason he can’t live a full life, be independent, get a job and enjoy himself’ it goes on to state that ‘He has problems with his sight and hearing and suffers from sleep apnea and low muscle tone. Due to his health problems his development has been delayed and although he is now two he is still not able to sit, crawl or walk’. Surely, the latter quote rather implies what the problems of later life will be and whilst the mother may well strive ‘to make him live independently’, is this really a realistic prospect? Though I admire the fortitude of the parents it is not a course of action that I would have taken. Voice-of-reality
  • Score: -5

2:50pm Fri 25 Apr 14

CathyBe says...

Independence and a fulfilled and happy life is possible for people with Down Syndrome and all kinds of disabilities. I can understand what Voice of Reality means and living with someone who has disabilities is really hard, but what more than makes up for the challenges (for me at any rate) is how incredibly proud you are of your child when they achieve things at whatever stage in their life. Also you do meet some amazing people, I wouldn't wish our situation on anybody, but neither would I have wanted to miss this experience.
Independence and a fulfilled and happy life is possible for people with Down Syndrome and all kinds of disabilities. I can understand what Voice of Reality means and living with someone who has disabilities is really hard, but what more than makes up for the challenges (for me at any rate) is how incredibly proud you are of your child when they achieve things at whatever stage in their life. Also you do meet some amazing people, I wouldn't wish our situation on anybody, but neither would I have wanted to miss this experience. CathyBe
  • Score: 8

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