STRENGTH IN NUMBERS

Strength in Numbers dedicated to my late mother Kay

Disabled pensioner trapped in her home

Wheelchair user Doreen Graham, 85, hasn’t left her flat in Lambeth, South West London, because the housing association that owns the block she lives in hasn’t provided a ramp to allow her to navigate steps.

Her daughter Laura Graham who lives with her mum describes the steps at the entrance to the building as ‘their very own Everest’. After 5 live Investigates made contact with Metropolitan Housing Association they have vowed to make the case a priority.

This clip was originally taken from 5 live Investigates on Sunday, November 13, 2016.

 Click on the link to watch 

http://www.bbc.co.uk/programmes/p04fz3c4

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Filed under: Disabilities, Elderly, ,

Winterbourne View scandal families urge PM to shut ‘outdated care units’

Families of victims of the Winterbourne View scandal have written to the Prime Minister demanding he shuts outdated care home institutions.

In an open letter they express “anger” at the “painfully slow lack of change” five years after abuse at the former private hospital near Bristol was exposed in an undercover BBC Panorama documentary.

A recent report revealed that some 3,500 vulnerable people with learning disabilities are still languishing at inpatient units despite a Government pledge to close them in the wake of the Winterbourne View scandal.

Now five years after the documentary was broadcast, families of some of the victims are demanding action.

Click on the link to read the open letter

http://www.herefordtimes.com/news/national/14525100.Winterbourne_View_scandal_families_urge_PM_to_shut__outdated_care_units_/

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Filed under: Disabilities, , ,

‘This shade is Complete Mental Breakdown’: YouTuber creates satirical make-up tutorial to candidly detail her struggle with the many symptoms of her depression

  • Amy Gelibter, 21, runs a funny, honest YouTube channel
  • In her latest make-up tutorial, she applies cosmetics while describing what depression feels like
  • She uses shades of foundation and lipstick she jokingly calls ‘You Don’t Need Medication’, ‘I’m Trapped Inside My Own Mind’ and ‘Just Smile More’
  • The Pennsylvania resident says she wants to tackle the stigmas surrounding mental illness to help depressed people feel less alone

A popular YouTuber’s latest beauty tutorial sees her applying foundation with a beauty blender, brushing on mascara, painting on liquid lipstick — and opening up about what depression feels like.

Amy Geliebter 21, is incredibly honest in the witty new video, which takes the form of a standard make-up tutorial but actually gets real about the causes and symptoms of depression while addressing the stigmas surrounding mental illness.

The Pennsylvania resident jokes about her struggle with depressive feelings, applying cosmetics in made-up shades that describe how she feels inside as well as how others expect her to behave.

Click on the link to read and watch the video

http://goo.gl/0q5T1z

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Opening up: The video aims to help remove the stigmas around mental illness

Filed under: Disabilities,

Are you willing to talk to the ITV with a prebudget news program illustrating how the disability benefits cuts will affect vulnerable people

From Susan Tee… I have been contacted again by ITV and Penny Marshall and her team with an urgent request this afternoon. She wonders if any of our members would be willing to talk to them in order to help with a prebudget news program illustrating how the disability benefits cuts will affect vulnerable people. She is looking at filming around Liverpool tomorrow afternoon (17th March 2016) and can travel a little if you can’t. Please contact the ITV team directly on the number below”

Call Reshma on 07966504154

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Penny Marshall

Filed under: Disabilities,

Mencap worker suspended over man in wheelchair piled with shopping

A picture shared on Facebook appears to show female carer smoking next to an elderly man with bags piled on his lap

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A Mencap support worker has been suspended after a photograph emerged apparently showing shopping bags piled on a client in a wheelchair, obscuring his vision.

The learning disability charity said it was appalled by the image, which shows a female carer smoking and talking on the phone next to an elderly man, who has several bags on a lap tray on his wheelchair. The image was posted to the charity’s Facebook page by Charlotte Shaw, who was concerned after seeing the image shared online.

“One of your staff in the Leicestershire area smoking whilst on the phone in Leicester shoving all her shopping bags on top of him with no care in the world,” she wrote in a post accompanying the photograph. “I don’t think she should work with vulnerable people,” she added. Steve Baker, regional director of services at Mencap, confirmed the charity had suspended the worker.

Click on the link to read more

http://goo.gl/kw8qeA

Filed under: Disabilities,

David Cameron ‘must take bold action to tackle NHS and social care pressures’

Leading charities have called on David Cameron to take “bold” action to tackle the growing pressures on health and social care, warning that vulnerable elderly and disabled people will “bear the brunt” if he fails.

A letter backed by nearly 40 organisations, including older people’s charity Independent Age, Macmillan Cancer Support and Marie Curie, urges the Prime Minister to set up an independent commission to review the system. It warns there is ” no room for complacency” and points to official figures that suggest nearly a quarter of the population will be over the age of 65 in just over 20 years’ time.

The letter states: “We need to ensure we have an NHS and social care system that is fit for purpose otherwise it is the elderly, disabled people and their carers who will bear the brunt of inaction. ” Bold long term thinking is required about the size, shape and scope of services we want the NHS and social care to provide – and an honest debate about how much as a society we are prepared to pay for them. “It is vital that you meet the challenge posed by an ageing society, and an underfunded care system, head on and establish a cross-party commission to review the future of health and social care in England.”

It comes after former health minister Norman Lamb warned some experts believe there will be a £30 billion “gap” in NHS funding by 2020 despite the Government already committing extra cash.

 

Click on the link to read more

http://www.dailymail.co.uk/wires/pa/article-3391237/David-Cameron-bold-action-tackle-NHS-social-care-pressures.html

Prime Minister David Cameron has been warned about the pressures facing the NHS

Prime Minister David Cameron has been warned about the pressures facing the NHS

Filed under: Disabilities, Elderly, , ,

Revealed: NHS hospitals investigate one in seven deaths of vulnerable patients

Jeremy Hunt urged to investigate after trusts examine just 209 of 1,436 deaths of inpatients with learning disabilities

Jeremy Hunt, the health secretary, is facing calls for a nationwide inquiry into the deaths of highly vulnerable patients in NHS care after it emerged that just one in seven such fatalities in hospitals in England have been investigated.

Data released to the Guardian under freedom of information laws show that hospitals in England have investigated just 209 out of 1,436 deaths of inpatients with learning disabilities since 2011. Even among deaths they classed as unexpected, hospitals inquired into only a third. Just 100 (36.2%) of the 276 deaths in that category were the subject of an investigation, despite longstanding concerns that these patients receive poorer care and are at higher risk of dying while in hospital.

“The findings from this investigation are very concerning,” said Prof Mike Richards, England’s chief inspector of hospitals. “We’re keen to work with the Guardian to look at the new information in more detail. This will help us to plan the review that CQC [Care Quality Commission] is already committed to doing.”

http://www.theguardian.com/society/2015/dec/20/revealed-nhs-hospitals-investigate-1-in-7-deaths-of-vulnerable-patients

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Filed under: Disabilities, ,

Father faces commuting from FRANCE every day because his sick sons need a drug to help them walk that’s not available on the NHS

  • William Baker, six, and brother Isaac, three have muscle-wasting disease
  • Duchenne muscular dystrophy will leave them both in wheelchairs
  • Family want pioneering drug, Translarna, which is available in France
  • Decision on whether it will be made available on NHS expected in February
  • Father Robert  is prepared to make 285-mile journey from London to Paris  

A desperate father whose sons both have a rare muscle-wasting disease faces relocating his family to France for treatment if a new drug is not offered on the NHS. Rob Baker, of Colchester, Essex, said he will make the 285-mile cross-country commute so his sons William, six, and Isaac, three, can get a pioneering drug for Duchenne muscular dystrophy (DMD). The disease, which causes muscles to deteriorate and leads to early death, typically sees sufferers confined to a wheelchair by the age of 11.  And while the first treatment to protect boys from the worst ravages of the disease is now available in several European countries including France, Italy and Spain, Translarna is yet to get the go-ahead in the UK.

Mr Baker, 40, said the family face a race against time for one of their children, as the treatment is only effective in patients who are still walking. He and his wife Clare, a neo-natal nurse, are considering moving to France where the drug is available on prescription if the decision in England expected early next year, does not go in their favour. There, he will have to commute back to London every day or be forced to spend nights in London away from his family, to carry out his job as a tax advisor. 

Click on the link to read more

http://www.dailymail.co.uk/health/article-3344104/Father-faces-commuting-FRANCE-sick-sons-need-drug-help-walk-s-not-available-NHS.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490

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William and Isaac Baker, pictured with mother Claire at Disneyland Paris, struggle to walk because they both have the muscle-wasting disease r Duchenne muscular dystrophy

Filed under: Disabilities, NHS, , ,

Court finds Benefits Cap unlawfully discriminates against disabled people’s carers

The High Court has today ruled that the Secretary of State for Work and Pensions has unjustifiably indirectly discriminated against unpaid carers for disabled family members by failing to exempt them from the Benefits Cap. The Court upheld the Equality and Human Rights Commission’s submission that carers’ Article 14 rights under the European Convention on Human Rights had been contravened by not considering the impact on disabled people.

Commenting in response to this ruling, Rebecca Hilsenrath, CEO at the Equality and Human Rights Commission said:

“We are pleased that the court has found the impact on disabled people of losing a family carer had not been properly considered. The effect could be profound and the loss of a trusted carer devastating.”

“The substantial reduction of income could jeopardise the ability of those affected to continue to care for severely disabled relatives. The court noted that the Secretary of State did not provide any information to Parliament about the effect on disabled people if their family carer were unable to continue.”

“The court also held that, rather than saving public money, it would cost considerably more for the care to be provided by local authorities or the NHS.”

Click on the link to read more

http://www.equalityhumanrights.com/court-finds-benefits-cap-unlawfully-discriminates-against-disabled-people%E2%80%99s-carers

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Filed under: Care Homes, Disabilities, ,

‘We’ve had to investigate the death of our son ourselves’

Jamie Appleby died in 2005 after being admitted to Ysbyty Glan Clwyd, but his mother says she has had to wait a decade for an inquest 

A mother whose epileptic and Down’s Syndrome son died in hospital 10 years ago has spoken of the heartache she has suffered waiting to find out what happened to her beloved boy. Jamie Appleby, 22, who also had a heart condition, died at Ysbyty Glan Clwyd in November 2005, almost a month after being admitted with sickness and pains in his head.

His mother Angie Hobson, from Denbigh, has spoken to the Daily Post about the strain of waiting for the coroner’s office to hold an inquest and rule on a cause of death – a process which has not allowed her to fully get over the pain of her loss. In an emotional interview, she revealed her resolve had been stretched to breaking point as she pursued her quest for answers surrounding her son’s death. She said: “It’s like having cloud over you isn’t it – for a very long time. “You go through peaks and troughs with it. “Because each time there’s a preliminary hearing you have to relearn the case.

Click on the link to read more

http://www.dailypost.co.uk/news/north-wales-news/jamie-appleby-inquest-glan-clwyd-10096263

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Jamie Appleby, who died at Ysbyty Glan Clwyd in 2005

Filed under: Disabilities, NHS Blunders, ,

Care of vulnerable people ‘put in danger’

The dignity, heath and wellbeing of older people and those with disabilities in England are in danger, health and care groups warn.

In a joint submission to the Treasury ahead of November’s Spending Review, 20 organisations said the care sector was facing a “deepening crisis”. They have called for funding to councils to be protected, as is happening with the NHS. Ministers said investment in health would also benefit the care sector.

The government pointed out that plans were being put in place to ensure greater joint working between the two sectors that would relieve some of the pressures. However, the signatories of the submission, who include leaders of councils, the NHS, care providers and charities, said that they still feared for the future.

The document said that the market was “fragile” with councils forced to freeze fees and providers exiting the sector. The submission said this was driving up prices for those who fund themselves and leading to fewer people getting state-funded support. While the government has pledged an extra £8bn a year for the NHS by 2020, social care has received no such assurances.

Click on the link to read more

http://www.bbc.co.uk/news/health-34310729?SThisFB

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Filed under: Care Homes, Disabilities, Elderly, Hospital, , , ,

MPs set to vote on ‘right to die’ for first time in 20 years

Controversial ‘right to die’ laws are to be debated in parliament today for the first time in almost 20 years. Labour MP Rob Marris will introduce the Assisted Dying Bill after coming top of the Private Members’ Bill ballot following the general election.

The legislation, which passed an initial vote in the House of Lords last year but failed to become law, is a first key question of conscience for the new House of Commons. Mr Marris said his Bill was about offering people “choice and dignity”.

In a blog post ahead of the debate, the Wolverhampton South West MP said: “With appropriate, strong safeguards, terminally ill adults of sound mind should be legally allowed to choose to have assistance to end their own lives.”

“I value life, and I do understand that some people believe very deeply that ending one’s own life is always wrong. Nevertheless, the depth and sincerity of their belief should not mean that they deny choice to those of us who do not share their beliefs”. ROB MARRIS MP

Click on the link to read more

http://www.itv.com/news/2015-09-11/mps-set-to-vote-on-right-to-die-for-first-time-in-20-years/?

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Filed under: Dementia, Disabilities, Elderly, Hospital, ,

NHS delays leave injured soldiers waiting MONTHS for new limbs: One veteran was left wheelchair-bound for eight months while waiting for prosthetics to be refitted

  • Wounded veterans are having to wait months for prosthetic legs that fit
  • NHS delays have left Clive Smith, 29, wheelchair-bound for eight months
  • He was provided with useless prosthetics after losing both legs in 2010
  •  Mr Smith, who competed in the Invictus Games, said he feels ‘abandoned’

NHS delays are leaving badly wounded Afghanistan veterans wheelchair-bound because many are having to wait months for prosthetic legs that actually fit properly, it has emerged. The girlfriend of one injured soldier accused doctors of ‘sheer incompetence’ after providing her partner with prosthetic limbs that are effectively useless. Clive Smith, who competed in the Invictus Games for injured veterans, has been confined to a wheelchair for eight months while he waits for his new limbs to be refitted.

The 29-year-old, who lost both his legs in 2010 while on a mine-clearing patrol in Helmand province, with 33 Engineer Regiment, says he feels ‘abandoned by the NHS’.  ‘It’s been tough. I’ve been a full-time prosthetics user for four years and now I’m wheelchair bound,’ he said. ‘We were told we would get the same level of care for my prosthetics on the NHS, but it just hasn’t been.’

Click on link to read more

http://www.dailymail.co.uk/news/article-3187629/NHS-delays-leave-injured-soldiers-waiting-MONTHS-new-limbs.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490

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‘Abandoned: Clive Smith, has been confined to a wheelchair for eight months while he waits for prosthetic legs that actually fit properly

Filed under: Disabilities, NHS, , , , ,

‘Stopping my lifesaving drug will be my end,’ says woman with rare illness

Sarah Long, oldest survivor of Morquio syndrome, pleads for NHS to provide expensive drug to treat condition

Every day Sarah Long becomes weaker. She cannot sleep for more than an hour at a time, loses concentration and struggles to speak. “I don’t have much longer,” she says with a remarkable lack of self-pity. At 44, she is by far the oldest person to have Morquio syndrome, an extremely rare degenerative impairment, caused by missing enzymes, that has stopped her from growing since the age of six.

Most people with the syndrome die in their teens from a heart attack or because their lungs fail. Only 88 people in England – and 160 worldwide – are known to have the syndrome and barely a handful have made it into their 30s. Long has earned her surname. But, then, since she lost her mother when she was a teenager, she has been nothing if not strong-willed. She puts her longevity down to “bloodymindedness, a strong heart, determination – that was something my mum taught me”.

Not only did she go on to defy every medical prediction and reach her 40s, she took a degree in sociology, then a master’s, and is now in the middle of studying for a PhD. It was the same determination that in 2012 made her choose to test a free trial of a drug called Vimizim. She had spent eight months laid low with pneumonia, a period in which she says she “didn’t function”, and felt going on the trial was worth the gamble.

Click on the link to read more

http://www.theguardian.com/society/2015/jul/25/morquio-syndrome-nhs-drug-funding-sarah-long

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Filed under: Disabilities, NHS, , ,

Urgent action pledged on over-medication of people with learning disabilities

NHS England has today promised rapid and sustained action to tackle the over-prescribing of psychotropic drugs to people with learning disabilities after three separate reports highlighted the need for change.

Research commissioned by the health body and delivered in three reports from the Care Quality Commission, Public Health England, and NHS Improving Quality has found that:

  • There is a much higher rate of prescribing of medicines associated with mental illness amongst people with learning disabilities than the general population, often more than one medicine in the same class, and in the majority of cases with no clear justification;
  • Medicines are often used for long periods without adequate review, and;
  • There is poor communication with parents and carers, and between different healthcare providers.

One of the reports, authored by Public Health England, estimates that up to 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without appropriate clinical justification.

Click on the link to read more

http://www.england.nhs.uk/2015/07/14/urgent-pledge/

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Filed under: Disabilities, NHS, , , ,

For London’s Wheelchair Users, Every Day Is A Tube Strike

Same Difference

Dear friends not in wheelchairs, before you get upset about London’s Tube strike, please consider this from Leonard Cheshire Disability.

View original post

Filed under: Disabilities, Uncategorized, ,

Please show me that you really care

Do you want to make people’s lives better?

Do you want to make your children’s and your parents lives better?

Are you concerned with the amount of medical mistakes in the news?

Are you a thinker or a doer?

Do you really care? 

Click on the link and show me that you really care http://goo.gl/3rf9c7

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Filed under: A&E, Cancer, Care Homes, Dementia, Disabilities, Elderly, GP's, Hospital, Mental Health, Named & Shamed, NHS, NHS Blunders, Self Help, Uncategorized, Whistleblowing, , ,

How Will MyNotes Medical work for you? Watch our walk-through slides

We have had a fantastic response regarding MyNotes Medical, but people are still unsure how MyNotes Medical works.

Here is a short slide presentation walkthrough how the programme will work. We NEED your support to help us to help you. Please pledge your support on our link http://goo.gl/3rf9c7  Thank you, Together We Can Make A Difference Joanna 

 

Filed under: A&E, Cancer, Care Homes, Dementia, Disabilities, Elderly, GP's, Hospital, Mental Health, Named & Shamed, NHS, NHS Blunders, Self Help, Uncategorized, Whistleblowing, ,

Diabetics’ amputation risks increased as NHS foot checks missed

More than 400,000 diabetics are at risk of having an amputation because they do not get what are meant to be annual NHS checks on their feet, campaigners are warning.

One in seven people with type 2 diabetes and almost three in 10 sufferers with type 1 are not receiving the recommended annual test of the health of their feet, claims Diabetes UK. An “unacceptable” number of diabetics are missing out on the checks, despite the National Institute for Health and Care Excellence’s (Nice) advice to the NHS that everyone with the condition should be tested each year, the charity says.

Click on the link to read

http://www.theguardian.com/society/2015/apr/27/diabetics-amputation-risks-nhs-foot-checks-missed-diabetes-uk

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Filed under: Disabilities, NHS, ,

Being ignored, neglected and forgotten. A powerful video from Age UK

This video really brings out the message, one day we will all be that much older but still the same person that took our first breath in life. This video should be compulsory for all nurses, doctors, and carers who work caring for the elderly to remember. Joanna

*****

See the contrast between the life Charles has now to the one he has lived. He’s being ignored, neglected and forgotten. Human rights give people the power to challenge poor care, and they apply to all of us, whatever our age.

Please share this film because people need to talk about human rights for older people.

Please click on the link to watch this powerful video

https://www.facebook.com/ageuk/videos/1004159362941871/

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Filed under: Care Homes, Dementia, Disabilities, Elderly, , , ,

NHS pays £13 million after botched births left siblings with cerebral palsy

After a two-decade legal fight the health service has finally agreed to pay compensation to a family left devastated by medical negligency

A mother has won a £13 million legal battle against the NHS after hospital blunders 17 months apart left two of her children with cerebral palsy. Paula McKay was left devastated in 1991 when daughter Natasha was born severely disabled after she was starved of oxygen during her birth at the former Sharoe Green Hospital in Preston in Lancashire. But just 17 months later her son Patrick suffered a similar botched delivery which left him needing constant care. It was months before doctors admitted there was a problem, telling his mother he was simply a ‘lazy little boy.’

Now after a legal fight lasting more than two decades Mrs McKay’s has been awarded a multi-million pay-out on behalf of her children. She is believed to be the first person to be the victim of two such catastrophic errors, made by the same hospital maternity team.

Click on the link to read more

http://www.telegraph.co.uk/news/health/news/11533356/NHS-pays-13-million-after-botched-births-left-siblings-with-cerebral-palsy.html

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Paula McKay and her children Natasha and Patrick Jackson

Filed under: Disabilities, NHS, NHS Blunders, , ,

Hayley Okines, who bravely fought premature ageing disease progeria, dies aged 17

So sad, such a brave and beautiful young soul. My thoughts and prayers go to her family. Fly with all the other angels Hayley, RIP. Joanna 

*****

A brave teenager who defied one of the world’s rarest genetic conditions has passed away at the age of 17.

Hayley Okines , who suffered with premature ageing disease progeria, was told she would not live past the age of 13. But she pushed on with life courageously and at the age of 14 published her autobiography, called Old Before my Time. However, despite pioneering drug treatment in the US that gave her a new lease of life, she was unable to conquer the disease.

Her mother Kerry Okines posted on Facebook tonight: “My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm x.”

Click on the link to read more about this remarkable young girl

http://www.mirror.co.uk/news/uk-news/hayley-okines-dead-girl-who-5450699

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Hayley Okines

Filed under: Disabilities, Uncategorized, , ,

‘Embrace the disability’ 4 parents share the pain and joy of raising a child with autism

On World Autism Awareness Week these four devoted parents speak about the challenges and rewards they face on a daily basis

Two weeks ago, the story of Odin Cumus’s birthday triggered a huge and heart-warming response worldwide. It also generated crucial awareness around the challenges someone with autism faces. In particular, the story struck a chord with many parents raising children with autism, who are familiar with the misunderstanding and exclusion autistic people and their families experience.

With World Autism Awareness Week this week, four parents have written about the highs, lows trials and rewards of bringing up a child on the autistic spectrum. By doing so, they have provided an emotional and much-needed insight in to what is often described as an invisible disability.

Please click on the link to read their stories

http://www.mirror.co.uk/lifestyle/family/embrace-disability-4-parents-share-5447834

Please watch Sarah Alderson’s video creating awareness for Autism

Filed under: Disabilities, Uncategorized, ,

Award Winning Poet – Adam Bojelian. February 2000 – March 2015. Fly high with all the other Angels Adam. RIP

I was shocked and saddened to hear of the passing of Adam Bojelian.  Such a talented, strong, courageous, and selfless young man.

Adam’s blog is on my links section under Disabilities… Writing by blinking – In The Blink Of An Eye.

This link below is from an article published in The Daily Mail 20th December 2012 about Adam’s life

http://www.dailymail.co.uk/news/article-2251086/Paralysed-schoolboy-12-amazes-mother-writes-Christmas-song-BLINKING.html

YouTube – Published on 14 Jan 2015. Words and music by Adam Bojelian aka AdsthePoet

Adam requested his family set up the page below in his memory for . Please donate

https://www.justgiving.com/AdamBojelian15

Filed under: Disabilities, Uncategorized, ,

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