Grandparents' grief over twin with Down syndrome who was given up for adoption - while her sister now attends top private school

by Julian Robinson from The Daily Mail:

A couple have told of their grief after their weeks-old grandchild, born with Downs Syndrome, was given up for adoption and separated from her twin sister.

The grandparents, who have chosen not to be identified, have described how the tiny baby was handed over to social services while the parents decided to keep the healthy twin.

Now seven, the girls live completely different lifestyles with one living overseas and attending an international private school and the other receiving state primary education and living with her new family in a terraced house in England.

The case has similarities to that of Gammy, a Down’s syndrome baby born to a Thai surrogate.

The child was at the centre of an international outcry after his Australian parents were accused of leaving him in Thailand with his surrogate mother Pattaramon Chanbua, 21, and taking home the healthy twin. 

The couple, David and Wendy Farnell later denied this was the case insisting that the Thai mother would not hand over Gammy and have said they want to get the seven-month-old baby back.

Burglars raid Top Munch cafe in Strood, taking charity pot for Maidstone Down’s Syndrome girl Winnie Martin

by Jenni Horn from Kent Online:

Thieves who raided a cafe and took thousands of pounds of stock and cash also stole a charity jar full of money collected for a little girl.

Burglars struck at the Top Munch cafe in Station Road, Strood, during the early hours of Tuesday morning and stole about £5,000 plus about £180 for the charity.

The cafe, which has been run by Medway boxer Brian Sanders for the past five years, was raising money for to send Winnie Martin, for treatment in America as she is suffering from Leukemia.

Social media boosts Down's Syndrome fundraising football event

by Pete Hughes from Oxford Mail:
Social media helped make this year’s Down’s Syndrome Oxford football tournament the most successful ever.
Organiser Niki Archer trebled the number of teams from seven to 21 and raised more than £1,000, thanks to her use of Facebook.
The 31-year-old from Wootton, whose four-year-old Archie has Down’s, said she was amazed by how successful Sunday’s tournament at Milton United’s ground near Didcot was. She said: “It was a lot of work and very tiring towards the end, but when I came home and turned on my phone, I found so many messages of thanks saying it was a wonderful day.
“The amount of money and awareness we’ve raised for a small charity is brilliant.”

teenager arrested and left ‘terrified’ in cell for nine hours after trying to retrieve favourite baseball cap from school on bank holiday Monday

by Adam Withnall from The Independent:

UK - A family has lodged a formal complaint against the Met Police after their teenage son, who has Down’s syndrome, was arrested and detained for nine hours after trying to collect his favourite baseball cap from school on bank holiday Monday.

Officers issued 19-year-old Abdul Al-Faisal with a caution for burglary over the incident in which he set off an alarm and was caught, with the cap in his hands, at 10am yesterday.

Abdul’s mother Roshina Al-Faisal told the Evening Standard how her son has a mental age between 10 and 12 years old and did not understand what had happened. She said she arrived at the police station to find her son “terrified” and in tears.

The family say Abdul was handcuffed, had his fingerprints taken, swabbed for DNA and had his details put on record – all while his parents did not know where he was.

Popular town crier nominated for Pride of Bucks

by Jack Abell from GetBucks:

THE man who was the UK’s first town crier with Down’s Syndrome has been nominated for a Pride of Bucks award.

William Ellis, 35, of Bois Moor Road, Chesham, recently stepped down from his position as Chesham town crier.

He hit national headlines when he was appointed in 2011. Before then, he spent a year as mayoral ambassador to Chesham’s town mayor.

Last month, he gave up the voluntary town crier role, with a presentation being held for him.

Mr Ellis was put forward for the award by Kathryn Graves, who is policy and projects officer for Chesham Town Council. “William has been an inspiring ambassador for Chesham and for people with learning difficulties, showing just what is possible,” she said.

“By having such a visible role in the community, William has given many residents the opportunity to meet someone with a learning disability and discover the positive contribution that they make to the town, something they may not otherwise have had the opportunity to do.

Special meeting between Down syndrome achievers Stephen Green and Micky Neal

by Alexa Copeland from The Northern Echo:
THE country’s first parish councillor with Down’s syndrome made a four-hour round trip to meet a North East man thought to be one of the oldest with the condition.
Stephen Green, 48, was elected as a councillor on Nuthall Parish Council in Nottingham in 2012, making him the first and only serving British councillor with Down’s syndrome.
When Stephen’s father Grenville read a Northern Echo article online about the 70th birthday of Down’s syndrome man Micky Neal from Darlington, he set about arranging a meeting between the pair.
Mr Green said: “When I read about Micky, I just thought ‘I have to meet this family’.
“It is just amazing that Micky is the same age as myself, and at that time things were so much more difficult for people with Down’s syndrome.
“They were expected to be put into institutions and it is amazing that this lovely family worked together to give Micky such a happy and loving life.”
Mr Green said that although attitudes have changed, his son has experienced some negativity from councillors who do not think he is up to the job.
He said that Stephen makes his feelings clear by giving a ‘thumbs down’ to those councillors who say things at meetings that he does not agree with.
Mr Green added: “In his role as parish councillor Stephen is breaking down barriers.
“When he goes into schools to award prizes you can see the difference in the children after they have met him.

Zoe Perryman, opens up on TV about her quest for love

By Anna Young from Kent Online:
A young woman proved all you need is love when she found happiness on a TV dating show for people with disabilities.
Self-confessed hopeless romantic Zoe Perryman, from Maidstone, has Down’s syndrome. She has two engagements under her belt but her failed relationships only make her more determined to find ‘the one’.
More than a million viewers tuned in to Channel 4 last Thursday to watch the 24-year-old take a chance on The Undateables.

The series follows a group of hopefuls with learning or physical difficulties on their quest for romance.

Zoe was set-up with 32-year-old Nsimba Lupepe, from Ashford.

The pair’s first date was at Chessington World of Adventures in Surrey and their second meeting was at Embankments, formerly the Barge, which floats on the River Medway in Maidstone. And five months after the episodes were filmed in September, the couple are still together. Zoe said: “It’s going really well. I go to see him and he comes to see me. I’ve met his family and he’s met my parents and some of my friends. He’s really nice. We’re very happy and just seeing how things go.”

Father of rape victim with Down syndrome speaks out

by Alice Clinton from The Enquirer UK:

The father of a young woman with Down’s Syndrome who was raped last September has spoken about the “devastating” attack on his daughter and his anger over the short sentence given to her rapist. 

This comes after 18-year-old Liam Felton (pictured), was jailed for eight years for the offence on Monday (13 January).

On the evening of Thursday, 12 September 2013 the victim, aged 22, had been at home in the Harold Wood area with her mother and stepfather. 

Earlier that night they had attended an evening held in memory of the victim’s best friend, who had recently died due to heart problems. 

The victim’s father has said she was upset after the evening and had a headache. When her parents were asleep, just before midnight the victim decided to go for a walk and she left the house.  

The victim walked to Station Road and sat on a bench. Felton, who lived nearby and did not previously know the girl, walked past and doubled back to sit on the bench once he noticed her. Felton attempted to engage her in conversation and after around 15 minutes the pair got up and walked for about five minutes. 

Felton then grabbed the victim, forcing her into an alleyway behind some shops before raping her twice and fleeing the scene. 

One of the UK's oldest men with Down syndrome celebrates 70th birthday

by Joanna Morris from The Northern Echo:
One of the UK’s oldest men with Down syndrome is today (Monday December 23) celebrating his 70th birthday.
Micky Neal will be surrounded with family and friends as he enjoys a tea party at his supported accommodation in Darlington.
The birthday is a significant milestone for Mr Neal and his family, who never expected to see him outlive his devoted parents, Ruth and Tom.
The eldest of five children, he was brought up in a time when Down syndrome sufferers were usually institutionalised and expected to die at a young age.
His mother Ruth refused to put him into a home and he was brought up alongside his siblings in a supportive and loving family – something his brothers and sisters feel has contributed to his long and happy life.
His brother Chris Neal and sisters Rosetta Forster, Fiona Neal and Debbie Allinson said he has brought them “nothing but joy” over the years.
Mrs Allinson said: “People with Down syndrome are no different to anybody else, they are loving people who have feelings and the same needs as anybody else.”
Despite the onset of dementia and his advancing age, Mr Neal is still a lively character who is known for his practical jokes.
Mrs Forster said: “He is always playing tricks. At the home he’s in, he’s left banana skins outside the office doors.
“He has a great sense of humour, he loves Ant and Dec and Carry On films.”

You can help make a huge difference to children's lives

by Hull Daily Mail UK:

Being involved with a charity is incredibly hard work and you do feel very responsible, but at the same time it is an extremely rewarding experience.

When my daughter Rachel was born eight years ago, she was diagnosed with Down's syndrome shortly after her birth.

There were 15 children with Down's born that year in Hull – more than usual.

Over the course of the first year or so, I would come into contact with a few parents with children with the condition. I met Lisa Bentley when both our children had turned one.

Lisa was a teacher whose little boy Isaac had Down's syndrome. Lisa wanted to set up a "singing and signing" group for children with the condition.

We both felt there was nothing for our children or for parents locally – and this is how Downright Special was born.

It takes up a lot of our time running a charity, but we know it is making a huge difference to our children's lives.

Our main focus is on education. Many of our school-age children attend a mainstream school, but every two weeks they come to our charity headquarters in Bodmin Road, Hull, with their teaching assistants, and have very focused lessons in small groups.

Our babies and pre-school children come every week for play and education sessions, where parents can learn and share advice and information.

We have regular visits from a speech and language therapist and from the physiotherapy service, both vital for helping the children's development.

We run workshops for parents and teaching staff to equip them with the skills needed to ensure our children reach their potential and are fully included in the family, in schools and in the community.

All of this takes its toll, of course, and I took a two- year career break so I could give Downright Special the attention it deserves.

We currently have two vacancies for trustees, and as last week was National Trustees Week, this seems like a great time to shout about the work we do, and see if anybody would like to get involved, either to fundraise for us, or work with us as a trustee.

I can't promise you that it will be easy, but for job satisfaction, it's unbeatable.

For more details, visit www.downrightspecial.co.uk or call 01482 420160.

UK Theatre Review: Up Down Boy

Up Down Boy by Sue Shields and the Myrtle Theatre is coming to theNormansfield Theatre Teddington on Saturday 9 November at 7.30pm.

Booking: 0333 1212 300 or lesley.alabaf@downs-syndrome.org.uk

Review by Hayley Goleniowska, mum and author of award-winning blog Downs Side Up

Every once in a while an experience shifts 
the tectonic plates of your soul. 
Powerless to stop the raw emotions held beneath, 
they flow forth and you have no choice but to face them, 
accept and deal with them before filing them away 
and carrying on your life, a little bit wiser.

Watching the breathtakingly powerful Myrtle Theatre play Up Down Boy by Sue Shields was, for me, such a moment. For in one hour it condensed, amalgamated and highlighted all the challenges and worries of parenting a child with Down’s syndrome and made me smile and laugh aloud at the lessons we learn, the silver linings and the eccentricities that make our worlds so wonderfully unique.

Sue crafted the play together with her son Nathan Bessell who plays Matty, a teenager with Down syndrome. We watch as he and his mother Odette, perfectly portrayed by Heather Williams, prepare for him to leave for college.

Children with Down syndrome are trained up by fire crew

by Matthew Edwards from The Swindon Advertiser UK:
YOUNG people with Down syndrome have been finding out all about the emergency services as they put out fires, cut people out of cars and drove around with the blues and twos on.
A group of young people have taken part in the Salamander Project and spent the week with the Wiltshire Fire and Rescue Service to experience a basic fire and rescue training course.
The programme, held at Drove Road Fire Station, encourages participants to work as a team, while building up confidence and self-esteem.

Yesterday the group put on a display of their new-found skills for family, friends and senior fire officers which included cutting casualties out of cars and climbing ladders to save a woman from a burning building.
Sixteen-year-old Stephen Thomas was taking part in his fourth course and said that he had grown in confidence since he first started.
He said: “I have enjoyed the course because of all the different things we have done. My favourite part was at Coate Water where I was able to jump in the water.

Lizzy Cundy talks to Alan Cumming, whose latest film is set to warm hearts

by Lizzy Cundy from Daily Express:

INSPIRED by a true story from the late 1970s concerning an abandonned teenager with Down syndrome taken on by a gay couple and their legal fight to keep him, Any Day Now isn't going to be packing in the masses when it opens around the country.

However, it's a powerful tale of love that touches on legal and social issues that are as relevant today as they were 35 years ago.

Boy with Down syndrome, 6, left to die because of tired doctor's mix-up

by Keith Kendrick from Parentdish:
A six-year-old boy with Down syndrome died after a hospital doctor mixed him up with another child who had a 'do not resuscitate' order.

Jack Adcock was admitted to the Leicester Royal Infirmary with breathing difficulties, a raised temperature and high heart rate.

His condition deteriorated and he suffered a cardiac arrest. But the inquest into his death heard how a paediatric registrar stopped staff who were trying to save the little boy – and said she didn't check his identity because she was too tired after a long shift.

Dr Hadiza Bawa-Garba said: "I should have checked the face before stopping. But I had been working for 12 hours with no break."

Therapy for boy with Down syndrome 'stopped for weeks'

from the BBC:

UK - A five-year-old boy with Down syndrome has had his specialist therapy cut because of staff shortages, his mother has claimed.

Zach Broxham, from Yealmpton, in Devon, is entitled to specialist speech and language therapy.
His mother, Sam, said the service was cut when therapist hours were reduced.
Virgin Care, which runs Devon's integrated children's services, said they were "committed to putting this right".
Ms Broxham said Zach may now need to be taken out of his mainstream school in Plymouth. He has a statement for six 30-minute sessions of therapy per school term.
She said: "He's had two sessions this term and he will not be getting any more.
"They [Virgin Care] have said they cannot provide any more until the end of July.
"If he doesn't get the therapy now, what alternative is there, but a special school?"
'Fully entitled'
Ms Broxham said the service helped Zach to learn his verbs, letters and numbers, so he "could do well in school".
She said the therapist, who worked four-days-a-week before going on maternity leave, was replaced with someone who worked one-day-a-week.

girl with Down syndrome, 12, beaten up by gang in park attack

by Sam Chadderton from Mirror News:

A 12-year-old with Down syndrome has been hospitalised by a vicious girl gang who beat her up in a park.
The youngster was playing in a local park in Bolton, Greater Manchester, when she was assaulted by a group of older girls.
The girl was taken to Manchester Children's Hospital with a serious head injury.
At first she said she had fallen off a swing after the incident on Wednesday.
But her family later reported to police on Friday that she had been attacked.
The nasty assault happened in Bobby Heywood Park, Great Lever, at 7.30pm on Wednesday, June 12.
Police are now appealing for anyone who may have been in the park at the time, or has any information about what happened, to contact them.

Child with Down Syndrome Booted Out Of Cineworld 'For Laughing Too Loud'

from the Huffington Post:
A mother has complained to Cineworld after her daughter, who has Down Syndrome, was kicked out of a children's film for laughing too loudly.
Ema Louise Brown took her seven-year-old daughter Sienna and nine-year-old son Shaun to watch The Croods, an animated comedy, on Broad Street in Birmingham.
However despite the whole theatre laughing uproariously, she said she was surprised to be approached by an usher.
She posted on the Facebook page for Down Syndrome Awareness later to explain what happened, writing: "Sienna was laughing her head off, as were the other children, but we were asked to leave by a very rude member of staff because she was apparently laughing too loud!
"I said to him she has down's and is quite loud at times, but was only laughing, and he said to me 'well I need you to leave.'"
After Ms Brown asked to speak to his manager, another member of staff came over and repeated their request for the family to go.
Though Ms Brown told them they were guilty of discrimination, the manager ignored her pleas and walked off, while the first member of staff reportedly replied: "You shouldn't take your child to the cinema."
She said she then lost her temper, and shouted at the man: "Because my child has downs and is loud with her laugh, because she doesnt understand she needs to laugh quietly, I shouldn't take her out?"

UK Govt Grossly Under-Reports # of Babies with Down Syndrome Babi Aborted

by Dr. Peter Saunders from LifeNews.com:
Some of the most common congenital abnormalities accounting for abortions in England and Wales are ‘trisomies’, in which there are three copies of one particular chromosome rather than two.
The most common trisomies are Down’s syndrome (trisomy 21), Edwards’ syndrome (18) and Patau syndrome (13).
But how many of each are aborted?  Well it depends very much on who you ask.
The National Down Syndrome Cytogenetic Register (NDSCR) was set up on 1 January 1989. It holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of Down’s, Patau and Edwards syndromes diagnosed antenatally or postnatally.
Its 2010 annual report was published in December 2011 and is available here.
In 2010, 1,868 Down’s syndrome diagnoses were made, 1,188 (64%) prenatally and 680 (36%) postnatally. Of the 1,188 babies diagnosed prenatally 942 were aborted, 25 miscarried or were stillborn, 52 were born alive and in 167 the outcome was unknown.
Of the 466 babies diagnosed prenatally with Edwards’ syndrome 344 were aborted. Of those 191 babies diagnosed prenatally with Patau syndrome 151 were aborted.
So in total, according to the NDSCR, there were at least 942 babies with Down’s syndrome, 344 with Edwards’ syndrome and 151 with Patau syndrome aborted in 2010.
This gives us an overall total of at least 1,437 abortions of babies with one of the three conditions. I say ‘at least’ because the NDSCR estimates that a substantial proportion of those babies with trisomy with ‘unknown’ outcomes were also aborted.
But if we go to the Department of Health’s abortion statistics we get a different story altogether.
The Abortion Statistics for England and Wales in 2010 were published in May 2011 and are also available on line.
But they tell us (Table 9) that in 2010 there were only 482 abortions for Down’s syndrome, 164 for Edwards syndrome and 51 for Patau’s syndrome. Together these made up 30% of the 2,290 abortions carried out for congenital abnormalities (ground E) in that year. But the total with one of these three conditions is only 697.
The disparities are astounding. 740 babies aborted with one of the three trisomy conditions, or 51.5% of the NDSCR’s total of 1,437, were apparently not reported by the Department of Health. For Down’s syndrome 460 out of 942, or 49%, were not reported.
If the NDSCR statistics are accurate, and there is no reason to doubt them, then this means that the Department of Health is being notified about less than half of the abortions carried out for trisomy 13, 18 or 21.
Does this mean that doctors are knowingly falsifying abortion certification forms by neglecting to put down the true diagnosis for babies with congenital abnormalities? Or are they perhaps, possibly even deliberately, mis-classifying them as abortions on mental health grounds? Or are they just not bothering to report at all?
Is this possibly even evidence of a failure of abortion reporting on a much greater scale?
Might this be an under-reporting problem that goes much beyond babies with trisomy conditions? Might it actually be that only half of all abortions for any fetal abnormality are being reported?
Is it even possible that this degree of under-reporting operates across other categories of abortion, perhaps even all categories? In other words might the Department of Health figures be grossly under-reporting the total number of abortions in England in Wales?
Whatever the truth of the matter is, the disparities in the figures are alarming and need to be investigated urgently.
LifeNews.com Note: Dr. Peter Saunders is a doctor and the CEO of Christian Medical Fellowship, a British organization with 4,500 doctors and 1,000 medical students as members. This article originally appeared on his blog. He is also associated with the Care Not Killing Alliance in the UK.

UKIP suspends Down syndrome abortion call candidate

from BBC News:
The party said Geoffrey Clark, who is standing for Kent County Council, would not be a UKIP councillor if elected.
Mr Clark said on his website he did not endorse the abortion idea but suggested it to cut the national debt.
Learning disability charity Mencap said it was disgusted and horrified at Mr Clark's personal manifesto.
UKIP said Thursday's ballot paper would still list him as its candidate but, pending an investigation, he would not be a UKIP councillor.
Chartered accountant Mr Clark, 66, who is also standing for Meopham North ward on Gravesham Borough Council in Thursday's by-election, says on his website his comments are personal and do not reflect UKIP policy.

He calls for a national debate and an urgent government review of the NHS, which he says "risks becoming unaffordable in the future".

The review should look at "compulsory abortion when the foetus is detected as having Down's, spina bifida or similar syndrome which, if it is born, could render the child a burden on the state as well as on the family".
He says the review should also look at medical treatment for those aged over 80, "which is disproportionately costly to the NHS" and might also include "legalising euthanasia and giving free euthanasia advice to all folk over 80".
He told the BBC: "I don't intend to offend.
"What I am trying to do is to provoke a debate in the nation because I am so disenchanted with our politicians."
'Forced eugenics'
Mark Goldring, chief executive of Mencap, said: "Much has been written about the Paralympics this summer changing attitudes towards disabled people for the better.
"Yet in the very same year, a council candidate has proposed forced eugenics against disabled people.
"It is abhorrent that Geoffrey Clark sees disabled people solely as a burden when people with a learning disability lead full lives and make valuable contributions to their communities and families.
"We question if he is fit for public office."

Mr Clark, who describes himself as a member of Meopham Parochial Church Council, Rotary International, the Royal British Legion and the Youth Hostels Association, says population, immigration and threats to the green belt are linked issues close to his heart.

If elected, he promises to promote the Christian ethic and British culture, roll back Islam, contain UK population growth and restrict immigration.
A UKIP spokesman said the party rejected Mr Clark's "abhorrent" views.
"The party was not aware of these views when it allowed him to stand under our name," he said.
"Mr Clark has been formally suspended as a UKIP candidate and will not be standing for the party again.
"We would like to apologise to anyone who has suffered distress as a result of this matter."

BBC asks Archers listeners to vote on future of Down's Syndrome baby

By Anita Singh from The Telegraph:

Fans of The Archers have protested at a “tasteless” BBC poll which asked them to vote on whether characters in the Radio 4 soap should abort their Down’s Syndrome baby.
The characters, Mike and Vicky Turner, recently learned from the results of an amniocentesis that their unborn baby has the syndrome.

The programme’s official Facebook page invited listeners to vote on what the couple should do next.

A message read: “Mike and Vicky’s dilemma makes up this week’s vote: should they go through with the pregnancy?”

Listeners complained that the BBC was treating a serious issue so lightly.

“Can’t help thinking this vote a little distasteful?” said one.

Another wrote beneath the vote message: “What a disgusting poll to run,” while others called it “disturbing and upsetting”, “crass”, “offensive” and “tasteless”.
One listener commented: “I was very surprised when I saw this poll. The storyline is hard, the considerations are complex and any decision will be fraught with doubts - not a scenario which can be answered by yes/no, by people who have never been there. Please remove this poll.”
Initially, the BBC defended the vote, writing on Facebook: “Sorry you feel this way. The polls tend to reflect the storylines that are most talked about in the programme, and this is Vicky and Mike’s dilemma. The result of the poll doesn’t affect the outcome of the storyline.”
However, it later bowed to calls for the vote to be removed from the website.
Writers for The Archers worked on the storyline in conjunction with the Down’s Syndrome Association, who described the vote as “unfortunate”.
A spokesman for the association said: “The scriptwriters wanted to get it right and they have been a joy to work with. They have been very thorough and the storyline shows the discussion that happen on a day-to-day basis as parents go through the screening process.”
A BBC spokesman said: "The Archers storyline on Mike and Vicky’s pregnancy has been well-received by the audience and raises a number of important issues about Down’s Syndrome, informed by the advice and expertise of the Down’s Syndrome Association.
"However this issue is too complex and sensitive for an online poll and we regret any offense the poll may have caused.”