Sleepless, hopeless, voiceless; an 18-year old's goitre-like ordeal

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Grace Panyin needs your gracious help

Sleepless, hopeless, voiceless; an 18-year old's goitre-like ordeal

Living a normal life is a reality Grace Panyin cannot really relate to.

She has been struggling since she turned five years old because of a strange goitre-like disease threatening to keep her life hopeless, her plight voiceless, and her nights sleepless.

Grace Panyin lives in Mumford in the Gomoa West district of the Central region. Assembly man for Penkye electoral area, Samuel Koomson visited Grace's family and describes her plight:

"Flesh began to grow along her gums inside her mouth, and has grown further down her throat, enlargening her throat and pushing its way through the sides of her neck."

Photo Reporting

Smelly blood often ooze out of the mouth as and when the area enlarges.

Her fishmonger mother and fisherman father have sent her to hospitals in the Central Region with doctors unable to help her. They have referred her to Korle-Bu Teaching Hospital in Accra, a place where poverty prohibits them from going.

For the many times she has been to the hospital, Grace has fallen in love with the green and white uniforms of the nurses and aspires to be one too.

Easier said than done. But for Grace, it cannot be even easily said, let alone getting it done.

The painful growth, wrecking its havoc over a 13-year period, means the young girl has had to drop out of school since Class Five - saving herself from ridicule from her mates.

You cannot look at Grace without making a grimace.

She barely speaks, capable of whispers only her family and close relatives understand. She moves around the house doing normal chores in silence for greater parts of the day.

You wouldn't know if she is smiling or if she is happy - the strange disease is ensuring that the 18-year old girl can hardly communicate the state of her soul to anybody.

Except by looking into her eyes - and if you look long enough you could see the imprisoned anguish groaning for help.

Grace means unmerited favour; but surely this is one favour - help - Grace really merits after a 13-year suffering with no sign of ending.

Photo Reporting

Source:|Edwin Appiah|This email address is being protected from spambots. You need JavaScript enabled to view it.

Families hope 'Frankenstein science' lobby will not stop gene cure for mitochondrial disease

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Deniz Safak's condition continued to worsen until he died last year at the age of 23Families hope 'Frankenstein science' lobby will not stop gene cure for mitochondrial disease

Change to IVF rules could make Britain the first country to allow therapy to change DNA in embryos

Robin McKie, science editor

Deniz Safak was five years old when he first displayed symptoms of the disease that would later take his life. "He started being sick and had intense, stroke-like seizures," his mother, Ruth, recalled.

Doctors were baffled by the boy's condition and it took months before a diagnosis was made. Ruth and her husband, Erdhal, were told that Deniz was suffering from mitochondrial disease, an incurable condition that is passed from mother to child and can often be fatal.

{sidebar id=12 align=right}Deniz's condition continued to worsen. By the time he died last year at the age of 23, he had become deaf, suffered intense migraines and was confined to a wheelchair. "That is how he spent his life at the end," said Ruth, who lives in Sunderland. "He was very bright and he knew what he was missing from life." There is no cure for mitochondrial disease and, although its symptoms vary in their severity, the condition is often fatal. Health officials estimate that there are several thousand people in Britain affected by the condition, which is caused by mutations in the DNA in the mitochondria, which exist inside the cells of their bodies.

"Mitochondria are the little power packs that provide our cells with energy and they have their own DNA," said Professor Douglas Turnbull, director of the Wellcome Trust Centre for Mitochondrial Research at Newcastle University. "The disease particularly affects cells that use a lot of energy, including those involved in hearing, pumping blood and firing nerves. About a third to a half of those who have the condition face an early death."

It is a grim scenario. However, hopes of tackling mitochondrial disease will be raised in a few weeks when the government announces regulations that will permit the use of an IVF technique that should rid affected families of the disorder. If these plans are approved by parliament, Britain will become the first nation to permit germ-line gene therapy, which will change the DNA of future generations in order to eradicate the condition.

The technique involves taking an egg with healthy mitochondria from a donor female. Its main set of nuclear genes is then scooped out and replaced with those of a woman affected by mitochondrial disease but whose basic nuclear DNA is healthy. The egg is then fertilised using her partner's sperm. In this way an embryo is created that has the central genes of the two parents but no longer carries the mutated mitochondrial DNA once carried by the mother. The technique is known as mitochondrial replacement. It has never been tried on humans, but has worked in animal studies.

Most scientists and doctors, particularly those who work with families touched by mitochondrial disease, support the introduction of the technique. However, some groups vociferously oppose its use. "The social benefits for a relatively small number of women … do not come near to justifying the potential health risks from these techniques to the child and the risks to global society that stem from human genetic engineering," said the campaign group Human Genetics Alert.

Anti-abortion groups also oppose mitochondrial replacement, while some tabloid newspapers have described the creation of embryos using the nuclear DNA of two parents and the mitochondrial DNA of a third-party donor as "three-parent babies" and have claimed that this represents a slippery slope to a "Frankenstein future".

This last claim particularly infuriates researchers. "It is wrong to say this produces three-parent babies," said Turnbull. "More than 99.9% of DNA is nuclear DNA and that will not be affected. Mitochondrial DNA accounts for around 0.1% of our total DNA. We are changing only mitochondrial DNA. We are not changing a person's hair or height or eye colour."

The potential of mitochondrial replacement is demonstrated through another of Turnbull's patients: Marie Austen, also from Sunderland. Her son, Adam, was seven when he was diagnosed with mitochondrial DNA disease. His heart was subsequently found to have been damaged but, before he could have a transplant, Adam's condition worsened and he died last year at the age of 13. "I wanted to see Adam grow up, but that has been taken from me," said Marie.

Austen has another child, a daughter, who at present has no symptoms. However, the disease varies in the severity of its symptoms as it passes from generation to generation. This poses problems for Marie's daughter. "One day she may want to have her own kids, but she will not be able to have them safe in the knowledge that this disease will not kill them when they are young. That is why I want this new technique to be given the go-ahead, so my daughter will have healthy mitochondria and can have children who will not die when they are teenagers, as her brother Adam did."

The disease is passed through the maternal line because men do not pass on mitochondrial DNA to future generations. Only women do that. However, the mutated versions do so with unpredictable consequences. Both Ruth and Marie have severe hearing problems, for example. However, the version picked up by their sons was far worse in its effects.

Last year the Human Fertilisation and Embryology Authority (HFEA) completed an extensive public consultation on mitochondrial replacement and found widespread support for it. Now the proposed regulations that will allow it to be carried out, under licence from the HFEA, are to published. Interested parties will give their views on these regulations before they are debated by parliament, probably on a free vote, later this year.

Alison Murdoch, professor of reproductive medicine at Newcastle University,hopes that parliament will approve the new regulations – though she is only cautiously hopeful. "This is controversial in some people's eyes and there will be attempts to block the regulations. My fear is that the government could still get cold feet and delay the vote, which would not be good news given we will have a general election next year.

"The trouble is that the people who oppose this work are much better organised and proactive than the people that actually need the treatment," Murdoch said. "They claim that around 30% of the population is against this kind of medical intervention. But when you actually sit down with a group of people and explain what you want to do, they all say the same thing: why not?"

Ruth Safak will also be watching the forthcoming battle over the implementation of mitochondrial replacement therapy. She is passionately in favour of the procedure. "When you lose a child, there is not enough time to get over it. This thing wipes out your life. The point is that if this treatment had become available for me when I was beginning my family, I could have had Deniz and he would still be with me now."

Source: The Guardian UK

Football Star Adebayor Goes To The Rescue Of The Alligator Kids

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Photo ReportingFootball Star Adebayor Goes To The Rescue Of The Alligator Kids

An Accra-based Togolese International football star, Emmanuel Sheyi Adebayor, has gone to the rescue of three Ghanaian children who have been attacked by a strange skin disease, which doctors at Jirapa, in the Upper West region, have failed to treat.

The football star has agreed to sponsor the medical bills of the three (3) children, who are from Kuunchen in the Jirapa district. The medical bill runs into several thousands of dollars.

Mr. Adebayor, The Chronicle gathered, has already mandated his agent, Fred Nuamah, the Executive Director of Ghana Movies Award Foundation, to liaise with all persons and organizations trying to assist in treating the children.

In a telephone conversation from his base in the United Kingdom, Adebayor said he got to know about the plight of the children through a lady, Faustina Dakora, late last year. He subsequently asked Fred to contact the children through the lady, for further discussion.

According to him, Fred went to Kuunchen with a medical team to assess the condition of the children, but proper attention delayed because his agent was busily working on the Ghana Movie awards programme.

The kids, Absalon Dakora Gyie, 16, Joseph Muininbong Gyie, 13, and Fidilia Amawatanya Gyie, 10, were first sent to the Jirapa hospital for treatment, but the medical authorities reportedly diagnosed their condition to be genetic, hence there was little they could do to assist them.

Madam Faustina Dakora, a philanthropist, on hearing about the plight of the children, went public and contacted a number of persons, including the international football star, Sheyi Adebayor, who was touched by the story and as a result showed concern by ensuring that a medical team, led by Dr. Nsiah Obeng of the Korle Bu Teaching Hospital, went to assess their conditions for further action.

Madam Dakora said along the line, one Michelle Mcgowan, an American lady, who got to know of the children’s plight on the internet, flew to Ghana to have first-hand information.

Fred’s involvement in the Ghana movie awards led to his communication gap with Dr. Obeng and Faustina.

The philanthropist said Michelle, a nurse by profession, took a sample of the affected children’s skin tissue to a laboratory in the United States, got in touch with a pharmaceutical company, also in the States, which was ready to supply medication for their use for life.

Since then, Madam Dakora said the American lady has been avoiding her group, and started talking to organizations in Ghana on her own, and this has eventually created a problem, since her group is also soliciting for funds for the upkeep of the ailing children.

According to Dakora, her group, in conjunction with the medical team from Korle Bu, led by Dr. Obeng, had secured accommodation at a place close to Korle Bu, to evacuate the children from Kuunchen, in order to access medical attention.

Dr. Nsiah Obeng, when contacted, said the condition of the children would need multiple medical attentions by different doctors, hence the need to move them close to the nation’s elite hospital.

He was optimistic that the international football star, Emmanuel Sheyi Adebayor, will assist as soon as Fred had time off his busy schedule to attend to the three children.

When Michelle Mcgowan was reached, she stated that on seeing the pictures of the children on facebook, she was touched and decided to help.

According to her, after sending the tissue samples to the States for diagnostic laboratory analysis, she wanted to begin medical treatment for them and so returned to Ghana, but could not make further progress in her bid.

She, therefore, contacted MTN, who agreed to sponsor part of the package, after she presented a budget in three phases to them. Michelle would, however, not indicate the full content of her budget, but mentioned a figure around 50,000 dollars.

Fred on his part said he is presently in the UK to meet the football star to discuss the issue of the afflicted children, but hinted that Michelle’s budget is becoming unreasonable, as she wanted $30,000 for evacuation to the States, GH¢11,000 for accommodation in Accra, for the children and herself.

She was reported elsewhere to have kicked against doctors at Korle Bu Teaching Hospital attending to the children, an allegation she denied to this reporter.

Fred Nuamah, however, said the package from Adebayor will be handled by Emmanuel Adebayor’s SEA Foundation, the mother body of his Ghana Movie Foundation, and appealed to all seeking the interest of the deprived children to contact Madam Faustina Dakora.

Source: The Chronicle

Mikaeel's Mum Detained As Body Discovered


Mikaeel's Mum Detained As Body DiscoveredMikaeel's Mum Detained As Body Discovered

Police searching for missing three-year-old Mikaeel Kular have found the body of a young boy.

Assistant Chief Constable Malcolm Graham announced the discovery just after 1am at a hastily convened news conference at Police Scotland's Edinburgh HQ.

There were gasps from people who had gathered for the update as he announced that the body had been found shortly before midnight

One person - understood to be Mikaeel's 33-year-old mother Rosdeep - has been detained in connection with his disappearance. :: Live updates as the search for Mikaeel Kular is called off

{sidebar id=12 align=right}ACC Graham said: "The investigation into the disappearance of Mikaeel Kular has been wide-ranging and fast moving.

"As a result of enquiries the body of a young child was recovered in Fife just before midnight.

"We strongly believe this to be the body of Mikaeel.

"A person has been detained in connection with the recovery of the body and members of Mikaeel's family have been informed of the recovery."

The body is understood to have been found on land surrounding a house in Kirkcaldy, Fife, which is owned by Mikaeel's aunt Pandeep Kular.

Sky News Scotland Correspondent James Matthews said: "There is no suggestion that police want to speak to her about any of this at this stage."

A neighbour told Sky News that Rosdeep Kular visited the house alone, by car, last week.

The family lived there for a time before moving to Edinburgh and neighbours remember Mikaeel and his twin sister playing on the steps.

Mikaeel was reported missing from his home in Edinburgh on Thursday morning.

Hundreds of police officers from across the UK joined the search and lines of volunteers swept the local area, searching for clues about his disappearance.

Police were told that Mikaeel had not been seen since his mother put him to bed on Wednesday night.

On Friday evening ACC Graham revealed the boy had not attended nursery since before Christmas and said there were "grave concerns" for his safety.

Sky News Crime Correspondent Martin Brunt in Edinburgh said: "We know that according to the police, a person was detained last night.

"The police haven't named that person detained, but we understand from our sources that it's Mikaeel's mother Rosdeep, known as Rosie.

"Under Scottish law, she can be detained initially for 12 hours during questioning and then on the say so of a senior officer can be held for another 12 hours.

"At the end of that period police must decide whether to release her, charge her or formally arrest her."

Police analyst Graham Wettone told Sky News: "(His mother) will be questioned as police try to establish what has taken place."

Police Scotland officers have cordoned off a road and been carrying out searches at a property in Kirkcaldy understood to be connected to the Kular family.

The force has not disclosed exactly where in Fife the discovery of the body was made.

The body is being left in situ for forensic and scenes-of-crime officers to carry out investigations.

There was sadness and anger among families living near Rosdeep Kular's home in Ferry Gait, Edinburgh, as they woke up to news of the grim discovery.

MSP Colin Keir, who joined the search for Mikaeel, was woken at 5am to be told the news.

He told Sky News: "It's just devastating and I think the community will take it personally.

"There was an unprecedented outpouring from the community in the hunt for Mikaeel.

"The community will be devastated, angry and looking for answers as to why this has happened."

Jackie Brownlee, 29, a mother-of-two who lives opposite the family home, said that local people will support each other as they try to come to terms with what has happened.

She said: "Everyone was hoping and now that hope's gone - we still can't believe it. But I think the community will come together because we have to."

Her son Darren, 11, added: "He was such a cute lad, always running around the street. I can't believe it's happened in my street - I'm really scared now."

Denise Fergus, the mother of James Bulger, the two-year-old who was murdered in Liverpool in 1993, tweeted her condolences.

She said on Twitter: "My heart is aching for that poor boy Mikaeel Kular brings it all back so sad."

Source: Sky News

Oye Lithur Goes Wild; Threatens To Jail Deputy


Richael Appoh & Nana OyeOye Lithur Goes Wild; Threatens To Jail Deputy

There was open display of power yesterday when Nana Oye Lithur, Minister for Gender, Children and Social Protection, allegedly threatened to cause the arrest of her deputy, Ms Rachel Florence Appoh and Director of Social Welfare Christian Babooroh.

The two officials incurred the wrath of Nana Oye Lithur because the deputy minister had authorized Mr Babooroh to release an 18-month-old baby girl to good Samaritans – Jenifer and Shirley – who had saved the child from her depressed mother.

The mentally unstable woman is receiving treatment at the Accra Psychiatric Hospital, but Nana Oye would not hear any explanation, demanding the return of the baby girl who has been with her foster parents for three weeks.

The Minister, who is allegedly not on talking terms with her two deputies, gave a 24-hour deadline on Monday evening for the rescued baby to be produced; otherwise she would send the two top officials to jail.

When the baby was not returned at midday yesterday, DAILY GUIDE learnt that Nana Oye, wife of President Mahama’s lawyer in the election petition, Tony Lithur, repeated her threat saying the officers must look for the baby girl who had been placed under the care of foster parents or find themselves in trouble.

Deputy Minister Rachel Florence Appoh then quickly placed a call to the foster parents, Shirley and Jennifer, to bring the baby named ShirleyJen, after the two ladies who took her from the ‘mad’ mother after the Osu Children’s Home refused her custody.

Nana Oye declined to talk to DAILY GUIDE on phone when she was called at press time, but rather asked the paper to come to her office.

A similar invitation to her office extended to Shirley and Jennifer was greeted with insults on Monday evening when she virtually called them whores and walked them out.

“Is this how to dress to the minister’s office?” she allegedly yelled at them.

The two ladies wept all the way to the offices of DAILY GUIDE on Monday evening after being maltreated by the Minister, Nana Oye Lithur.

Narrating their ordeal after their interaction with Oye Lithur, the good Samaritans claimed that the minister verbally abused them when she learnt that the child was in their custody.

In a fit of anger, they said, Oye Lithur went beyond chastising them for keeping the child, and questioned the appropriateness of their dressing to her office.

When contacted on phone for comments, Rachel Appoh corroborated the story, but indicated that the arrest was not directed at her but to Mr Babooroh, the Director of Social Welfare.

She said, “Last night the Social Welfare Director called me that the Minister (Oye Lithur) is saying that she will arrest him if he does not bring the child today (yesterday) by 10:00am. Seriously, I panicked, I could not even talk; I was even short of words.

Good Samaritans, Shirley (left) and Jennifer wiith the baby“I don’t know how she managed to get Jennifer and Shirley into her office, a whole lot. I don’t know if they are there with you, you can beg them for us,” Rachel told DAILY GUIDE while panting.

Rachel, who is in charge of Social Welfare, further stated: “It’s not me as a deputy minister but the Director of Social Welfare. I authorized the Social Welfare Director to rescue this baby. To be fair, I have not spoken with my minister, it was the director not me. She called the director last night that she will arrest him if he does not bring the child today so the director called me”.

Ms Appoh noted that the good Samaritans had signed an undertaking before taking the child away, stressing, “Actually, there was an undertaking that was signed before we even gave the child to these ladies. The Osu Children’s Home could not accept this child at that night around 1:00pm. We could not do anything. The director could not have taken this child home. He could do nothing than to give this child to these ladies”.

Director Runs

“To me,” she continued, “I think she went (too) far; but I haven’t even talked to her. The director could not stay in the office today because of that arrest (threat); I mean he is so frustrated, I don’t even like the way he is panicking. I am not even comfortable; I think she went too far”.

It may be recalled that the media recently reported that the Department of Social Welfare had rescued an 18-month-old baby girl from her mother, who was believed to be mentally depressed.

The woman’s name was given only as Yawa, believed to hail from the Volta Region, and who has been sent to the Accra Psychiatric Hospital after a very fierce struggle with Police personnel assigned to move her from an open spot at the Printex Junction on the Spintex Road in Accra.

She was first chained to the Cantonments Police Station before she was finally sent to the Psychiatric Hospital.

At press time yesterday, DAILY GUIDE learnt that the good Samaritans, Shirley and Jennifer, had handed the child over to the officials of the Department of Social Welfare.

BY Jeffrey De-Graft Johnson

Source: Daily Guide