Girl, 4, mistaken for toddler due to rare disease affecting just 30 people worldwide – Mirror Online

Thank you for subscribingWe have more newslettersShow meSee ourprivacy notice

A four-year-old girl is often mistaken for a toddler due to a rare disease affecting just 30 people worldwide.

Violet Cocking still wears clothes designed to fit an 18 month old – and is only a few inches taller than her four-month-old sister, Ada.

Mum Charlotte Cocking, 32, was concerned about her size from birth, but says medics were unable to find a cause for two and a half years.

But after months of turmoil, a genetic test revealed Violet from St. Ives, Cornwall, had microcephalic osteodysplastic primordial dwarfism type 1 – a genetic condition inherited from both parents.

Charlotte and her husband Robert, 43, unknowingly carried the dwarfism gene which meant Violent inherited the same defective gene from both.

Ada

Charlotte, who is a bartender said: “People assume Violet is a toddler so when I tell them her real age, they look at me with a very confused expression.

“Violet has settled well into reception but requires extra support – she has a really good friend called Willow who looks out for her.

“She is 3ft 8in, a foot taller than Violet, which is a pretty average height for a four-year-old but their height doesn’t stop them from being the best of friends.”

Violet was born at 36 weeks yet she looked smaller than ever and weighed 2lb 15oz.

Charlotte added: “She was kept in NICU as she was unable to feed and could only stomach 50ml of milk a day – the equivalent to a double shot in barmaid terms.

“As the months passed, she barely grew, and I became very concerned that she was wearing newborn clothing at six-months-old.

“She wasn’t much bigger than a pint glass at three-months old.

age
Read More

“Even now she wears specially made shoes which are a size two and a half for babies.

“But periodically she was fine, we had genetic and blood tests with the NHS but the results were never abnormal – but I knew something was wrong.

“I researched the living hell out of her characteristics – she had curved fingers and puffy feet along with a really small head.

“Dwarfism always popped up in a search, but I assumed I was being daft until we had another test that involved a saliva swab from me, Rob and Violet, when she was two and a half.

“We were over the moon to finally a diagnosis that revealed she has a rare form of an already rare form of dwarfism.”

The couple discovered a charity called ‘Walking with the Giants’ who have a specialist genetic team that has diagnosed five other children with Violets condition in the UK.

All

There was a 50 per cent chance Violet would be a carrier like each of her parents and a 25 per cent chance to not have the condition.

Violet is still currently reaching all her milestones and despite her development being delayed, she did learn how to walk seven months ago.

Charlotte said: “I can’t help but feel like I wasted the first year of Violet’s life obsessing with what is wrong with her.

“I feel guilty, but I was desperate to get an answer which is when I came across the charity Facebook group.

“I can’t thank them enough for their support and it is nice to be able to speak to other parents who have children with a rare form of dwarfism.

“We don’t know what to expect for the future, but she is very lucky as other children with this condition are known to be severely disabled.

Babies

“Violet isn’t a typical child, but she is smart and funny – she is mentally three-years-old.

“Her speech is behind and can be hard for others to understand and she can only walk a short distance in places where she is familiar with.”

Read More

Top news stories from Mirror Online

Charlotte feared her second daughter Ada, now four months, may have the same condition but a Chorionic villus sampling at 11 weeks confirmed she was born without.

She adds: “I was a nervous wreck waiting for the results with Ada, as we wouldn’t be able to cope with another disabled child.

“It was great when they said she was unaffected and already Ada is almost as big as Violet.

“But that doesn’t stop her from being the best big sister and she always bringing Ada her toys.”

Related posts

Mums have their say on the best hospitals to give birth at in the North East – see how yours fared – Chronicle Live

Thank you for subscribingWe have more newslettersShow meSee ourprivacy notice

Two North East hospitals have been voted among the best places in England to give birth as the region once again outperformed the rest of the country in a survey of new mothers.

The annual maternity services poll – which asked 17,151 women about their experiences of pregnancy and birth – found an improvement in the standard of care offered to new mothers on NHS wards nationally.

The poll, from the Care Quality Commission (CQC), showed many women saying positive things about their care during pregnancy and birth, but a poorer experience of care postnatally.

Results published on Tuesday, January 28, showed that a fifth of new mothers were not told how to access help if their mental health were to decline after giving birth and more than one in 10 (12%) were not warned about any changes they might experience to their mental health after having their baby.

Read More

Sunderland Royal Hospital was the best performing nationally with the most positive responses to the survey (88%) when compared to all other trusts and a national average of 78%.

And the Newcastle upon Tyne upon Tyne Hospitals NHS Trust, which runs the Royal Victoria Infirmary, was the only trust to be rated ‘better than expected’ in all three main categories – labour and birth, staff during labour and birth, and care in hospital after the birth.

Gateshead, Northumbria Healthcare (which covers Northumberland and North Tyneside) and County Durham and Darlington trusts scored ‘about the same’ as other trusts overall.

There was no data available for South Tyneside due to the size of the maternity unit.

The poll was among women who gave birth in February 2019.

Sunderland Royal Hospital

High-scoring categories for City Hospitals Sunderland included 9.8/10 of women saying they were treated with respect and dignity during labour and birth and 9.8/10 who said they were spoken to during labour in a way they could understand.

Newcastle’s highest scoring categories for the Royal Victoria Infirmary were also ‘respect and dignity’ (9.8/10) and partners being involved as much as they wanted (9.8/10).

The Northumbria Healthcare NHS Foundation Trust, which runs the Northumbria Specialist Emergency Care Hospital in Cramlington, scored 9.7/10 for partners being as involved as they wanted and for clear communication.

QE Gateshead scored 9.9/10 for partner involvement and 9.3/10 for both skin to skin contact after birth, and the cleanliness of the ward.

County Durham and Darlington were rated ‘better’ than other trusts in the country for confidence and trust in staff (9.5/10) and receiving the information and explanations they needed after the birth (8.6/10).

Read More

Stella Wilson, directorate manager for women’s services, at Newcastle Hospitals, said: “We’re delighted to see such wonderful feedback from the National Maternity Survey.

“Patient feedback is one of the best ways for us to measure the quality of our maternity services and in addition to these fantastic results and through our Maternity Voices Partnership, we actively seek the views of all women across Newcastle who have been in our care.”

Sheila Ford, head of midwifery at South Tyneside and Sunderland NHS Foundation Trust, said: “To be rated nationally as the best performing Trust in the whole country is absolutely fantastic news for the team and shows that local mams are receiving the very best maternity care right here in Sunderland.

“This is testament to the hard work of our maternity team and shows the level of care, dedication and compassion that our staff show to all of the families who choose to deliver with us and I am extremely proud to be part of such a wonderful team.

“There are, of course, areas where we must improve further and we will be looking at the results in detail, alongside other sources of feedback to the Trust, to make sure we continue to listen, learn and continue to develop the very best maternity services for local women in our area.”

Lesley Heelbeck head of midwifery at Gateshead Health said: “In Gateshead we have a really enthusiastic and committed team so it’s good to see such positive ratings from the CQC. Mothers and families are central to developing the services here at Gateshead so we’re always looking at ways we can improve.

“We’ve developed our maternity voices partnerships so that we can talk to local people and listen to their views more closely. Because we’re a smaller unit we aim to provide much more personal and individual care to everyone who comes here to give birth.

“We want as many local people as possible to come here and start their family with us and we aim to improve even further in the future.”

A spokesperson for County Durham and Darlington NHS Foundation Trust, said: “Pregnancy, labour and childbirth are one of the most important experiences women have and we’re delighted to have received this excellent feedback from women in the care of our maternity services.

Northumbria Specialist Emergency Care Hospital, in Cramlington, Northumberland

“In particular, we’re proud that in six categories our score was higher than for most trusts across the country.

“These include the number of women who said they had confidence and trust in those caring for them during labour and birth and the number of women who said their decisions about how they wanted to feed their baby were respected.

“We’re also delighted that we scored above the national average for the number of women reporting that a midwife or health visitor asked them about their mental health.”

Jenna Wall, head of midwifery at Northumbria Healthcare NHS Foundation Trust, said: “Providing our families with the best possible experience while having a baby with us is one of our top priorities and we welcome the feedback from the national maternity survey.

“We are pleased that during labour and birth women felt they were communicated with in a way they could understand, they were treated with respect and dignity and they had confidence and trust in the staff caring for them.

“It is also great that we have scored highly on facilitating skin to skin contact with the baby shortly after birth, involving partners and enabling them to stay as long as they want at our Northumbria hospital.

“These results are testament to our hard-working teams and I’d like to thank them for the dedication and compassion they show to women and their partners at this special time.

“We will, however, continually strive to do even better for our families and further improve the care during and after the birth of a baby.”

See how your trust scored here and how it compared nationally to other trusts:

City Hospitals Sunderland (South Tyneside & Sunderland)

Labour and birth – 9.2/10 – About the same

Staff – 9.3/10 – Better

Care in hospital after the birth – 9.0/10 – Better

County Durham and Darlington NHS Foundation Trust

Labour and birth – 8.9/10 – About the same

Staff – 8.8/10 – About the same

Care in hospital after the birth – 7.6/10 – About the same

Gateshead Health NHS Foundation Trust

Labour and birth – 8.8/10 – About the same

Staff – 8.6/10 – About the same

Care in hospital after the birth – 7.8/10 – About the same

Northumbria Healthcare NHS Foundation Trust

Labour and birth – 8.9/10 – About the same

Staff – 8.8/10 – About the same

Care in hospital after the birth – 7.8/10 – About the same

The Newcastle upon Tyne Hospitals NHS Foundation Trust

Labour and birth – 9.4/10 – Better

Staff – 9.3/10 – Better

Care in hospital after the birth – 8.5/10 – Better

Related posts

How my son went from gamer to compulsive gambler

The NHS has opened its first clinic for young people addicted to gaming and gambling, a year after a Gambling Commission report found that 55,000 11-to-16-year-olds in the UK were problem gamblers. For some the path to gambling begins with playing online games, as the BBC’s Becky Milligan heard from the father of one young man now getting help for his addiction.

“Not in a million years, not in a million years did I think that gaming could lead to compulsive gambling.”

Steve is sitting on a bench in a churchyard. He’s agreed to talk to me about his son’s gambling addiction. He’s nervous, he hasn’t done an interview before and I can feel his anxiety.

His son, now in his early 20s, is in recovery and doing well, “but we take one day at a time” he says.

“We’ve had a terrible three years. We wouldn’t want anyone to go through what we have gone through. When we first discovered our son had the compulsive gambling disorder we didn’t know what to do.”

I tell Steve that I’ve spoken to other parents whose children have developed gambling disorders, and they also paid off the debts at first, not realising the extent of their children’s addiction.

“We thought this was just a little glitch, this is what kids do,” one father told me. And that’s what Steve thought at first.

He and his wife had known for some time that their son enjoyed having the odd bet. But lots of their friends enjoyed a flutter and it didn’t seem to be out of the ordinary.

A year later, though, Steve was shocked to find out his son was gambling with other people’s money and losing large amounts.

“It was online roulette. That was his downfall,” he tells me.

Now Steve realised it was a very serious problem. He and his wife didn’t know what to do. They began to isolate themselves, avoid going out or seeing friends. They were worried what people would say.

“We were pretty helpless. We didn’t know which way to turn. We spent months finding the answers and doing our own research,” Steve says.

Last year, he and his wife went to a GamAnon meeting for families. Earlier this year his son also began to get help.

Steve has had a few months to do a great deal of research and he now believes his son’s addiction was sparked when he was 12 or 13 and was obsessed with playing online games, particularly football games.

He would play for hours and hours in his bedroom, Steve tells me, and all his mates were into to it as well. Steve didn’t really understand what the games were about, let alone the new technology the games used. And anyway, at least his son was occupied, he says.

“We all want an easy life, a quiet life. Parents can be lazy. If he was playing upstairs I would think, ‘It’s not doing any harm is it?'”

Steve now thinks that the football games promoted habits, including spending hours online, that “developed into gambling”.

Crucially, Steve’s son was encouraged to pay for extra products, such as “ultimate team packs”.

The identities of the players in these packs would only be revealed once he had paid, which Steve says introduced his son to the “thrill of gambling”, the game of chance and risk – including the chance of acquiring a star player who would make him unbeatable.

Steve thinks the difference between online gaming and gambling is very subtle, and that those children who excessively game online, like his son, are at risk of becoming compulsive gamblers later in life. It doesn’t matter, he says, whether the game involves winning or losing real money.

Dr Henrietta Bowden-Jones, a psychiatrist at the new NHS treatment centre, says no link between gaming-related activities “that may be toxic for young people” and gambling has yet been established. It’s currently a “big controversial conversation”, she says.

“I believe so little is known in this country about both these behavioural addictions in children, that we need to hear it on the ground, we need to understand what these people are doing then work with policy makers, politicians and public health professionals to change the environment they live in,” she told the BBC.


It has been a very hard few years for Steve and his family. He recently decided to leave his teaching job and set up a charity, GamFam, to help other parents who might be in a similar position.

However complicated it is, Steve says that parents need to know what their children are doing online, they need to become the experts in order to protect them.

“Do research, put the barriers in place, take control of the device, set up family time. Screen [the child’s activity] so that you are in control of what’s going on. And most importantly do not have any of your credit cards, debit cards linked to the account,” he says.

“There are horror stories where children are spending excessive amounts of money on in-game purchases. Many of these games promote themselves as free games but the loot boxes in the games [are not].”

Like the “ultimate team packs” that Steve’s son used to buy, loot boxes may contain virtual items such as weapons or shields that help a player win the game – and gamers don’t know what’s in them until they have bought them.

MPs on the Digital, Culture, Media and Sport committee recently recommended that the sale of loot boxes should be regulated as gambling, and that selling them to children should be banned entirely.

In a statement to the BBC, the association for UK interactive entertainment, Ukie, echoed Steve’s call for parents to monitor their children’s behaviour online.

“Alongside robust age-ratings for games, all major consoles and mobile devices offer smart and simple parental controls. Above all, we recommend that parents and carers engage directly with players, talk to them about the games they are playing and even join in,” the statement said.

Wes Himes, chief executive of the Remote Gambling Association, said it was very difficult for children to get through the verification process to gamble online. He added that the industry was not allowed to advertise near schools, or to target under-25s with its advertising.

Steve Ginnis of Ipsos Mori, however, told the BBC that focus groups conducted by his company showed that children and young people found aspects of existing gambling advertisements appealing – “in terms of promotional offers and use of celebrities and presenting it as fun or skilful”.


‘Part of the game’

Stewart Kenny, the Paddy Power founder who resigned in 2016 over what he saw as the failure to tackle problem gambling, says advertising is “normalising” gambling for children, and that it has become “nearly part of the game” when watching football.

“That is dangerous, because it is promoted by well-known people, it’s a constant barrage of advertising they see it before, during and after the match… It’s become normal for children to think gambling and soccer are the same thing.”


Steve says his family is now doing better. His son’s last bet was in February. They are not ashamed any more about what happened, but in order to protect his son, Steve doesn’t want to give his full name.

He hopes his new charity will be able to visit schools and talk to parents.

Steve says the problem of children’s gambling addiction has to be addressed. If nothing is done, he believes we will have an “epidemic on our hands of catastrophic proportions”.

At present, he says, the only help these youngsters have got is their parents.

“For me, if I don’t do this now, then I will never do it, I feel it is a calling, I need to do, I need to be putting the message out there and support the parents. I wouldn’t wish what we have been through on my worst enemy.”

Related posts

Mental health website struggles after royal advert

A mental health website has struggled to cope with demand after a promotional video voiced by the dukes and duchesses of Cambridge and Sussex aired on TV. The film screened on Sky, ITV, Channel 4, Channel 5 and MTV on Monday evening.

Since then the Every Mind Matters website has been intermittently showing the message: “Something went wrong. Please refresh or try again later.”

Public Health England said it was looking into the crash but thought it could be due to a surge in traffic.

news

The three-minute film is intended to promote Every Mind Matters, an initiative by Public Health England (PHE) and the NHS, to help people look after their mental health and support others.

The film is narrated by the Duke and Duchess of Cambridge and the Duke and Duchess of Sussex, who in May launched a text messaging service for people experiencing a mental health crisis through their royal foundation.

In the film, written by Richard Curtis and directed by Rankin, Prince William begins: “Everyone knows that feeling, when life gets on top of us.

“All over the country, millions of us face challenges to our mental health – at all ages – at all intensities, and for all sorts of reasons.

“We feel stressed, low, anxious, or have trouble sleeping. Me, you…”

Prince Harry continues: “Your brother, your mother, your colleague, or your neighbour. Waiting, wondering, hoping, hurting.

“We think there’s nothing to be done. Nothing we can do about it.”

Meghan then says: “But that’s so wrong. There are things we can do. From today, there’s a new way to help turn things around. Every Mind Matters will show you simple ways to look after your mental health.”

BBC Catherine continues: “It’ll get you started with a free online plan designed to help you deal with stress, boost your mood, improve your sleep and feel more in control.”

The royals are joined by other celebrities and public figures whose lives have been affected by poor mental health.

They include the actresses Gillian Anderson and Glenn Close, singer Professor Green, former England cricketer Andrew Flintoff, television presenter Davina McCall, and Bake Off star Nadiya Hussain.

Related posts