The woman who lost all seven children to mitochondria; a rare genetic condition
Sharon Bernardi lost all seven of her children to a rare genetic disease. It has driven her to support medical research that would allow defective genetic material to be replaced by DNA from another woman.


Sharon Bernardi and her son Edward, who died last year aged 21
Every time Sharon got pregnant she would pray that this time it would be different.

She felt fine during pregnancy and the births went well, and then quickly something would start to go wrong.

Each of her first three children died within hours of birth and no-one knew why. “It took us a long time to get over the first one and then it happened again. I was bewildered,” says Sharon, from Sunderland. “I was in shock.”

After the third child died, doctors began to suspect that the deaths weren’t coincidental. But genetic investigation didn’t provide any definite answers.

At the same time, her mother revealed that she’d had three stillbirths before Sharon had been born. Further investigations by doctors revealed that members of Sharon’s extended family had lost another eight children between them.

“I didn’t know about my mum’s history,” says Sharon. “There was no need for me to know. I was my mother’s only child. And I think that in her era people didn’t really talk about things as they do now.”

It’s hard when you want to have a family, and you finally have a baby… and then somebody tells you that at any moment your child is going to die” Sharon Bernardi

Then along came Edward, Sharon’s fourth child. This time the doctors were more prepared. For his first 48 hours, Edward received drugs and blood transfusions to prevent the lactic acidosis (a kind of blood poisoning) that had killed his siblings. Five weeks later Sharon and her husband Neil were allowed to take Edward to their home in Sunderland for Christmas.

Edward lived. Although his health was often poor and Sharon had to care for him a lot of the time, he was a cheerful, active boy. At the age of four he started to have seizures. It was then that the doctors were finally able to diagnose Edward’s – and indeed Sharon’s – problem.

Having gone through the history of Sharon’s babies, doctors diagnosed Edward with Leigh’s disease, a disorder that affects the central nervous system. The disease is caused by a defect in the mother’s mitochondria, often referred to as the power plant of the cell.

“This is going to sound strange but I was relieved that, at last, I had an answer.”

Not that the news made life much easier for Sharon. Her doctors told her that Edward could enjoy long periods of remission but that his health could also go down quite quickly. And meanwhile there was always the risk of Edward dying in one of his seizures, which could last for days.

“It’s hard when you want to have a family, and you finally have a baby like Edward, and you think you’re finally getting somewhere with your hopes and your dreams, and then somebody tells you that at any moment your child is going to die.”

Sharon and Neil Bernardi were told that Edward was going to die before he was five. “Obviously, you either go down or you start fighting,” says Sharon. Edward and his mother were fighters. In the end Edward survived into adulthood, dying last year at the age of 21.

Sharon and Neil kept on trying for a healthy baby but without luck. Although three more children were born, none lived beyond the age of two. Each time one of their children died, they told themselves that “the death was a one-off”. After their last child had a heart attack and died in 2000 they stopped trying.

“People ask, what was different about Edward? How come he survived as a baby when he had all the problems that would later build up? I don’t know but Edward had some fight in him. He was fighting to survive all his life. I think that was in his personality.”

The death of all her children put strains on her marriage, and on the wider family. “It also affects the family, the grandparents, their hopes and dreams for their grandchildren.”

People have accused Sharon and Neil of being selfish for wanting what they cannot have – their own family of healthy children. “I don’t think I am selfish,” says Sharon. “I wanted my child to be healthy.”

“In the last year of his life Edward was in chronic pain. He had dystonic spasms caused by things going wrong in his brain. His muscles would go into spasm for up to six hours at a time. Drugs could not help him. Part of Edward’s body was beginning to fail.”

The suffering of Sharon’s children has convinced her of the need to pursue the kind of genetic therapies that would allow mitochondrial defects to be remedied.

“When you see somebody in pain you don’t want to see somebody else in pain. You don’t want to see a child who is born only to suffer and die before they’re two, or if they do survive to have devastating disabilities.”

“It’s not about being selfish. It’s not about wanting designer babies. It’s not about doing injustice to people with disabilities. It’s about trying to create a healthy baby. It’s about trying to give a child a future.”

Facts about Leigh’s disease: Mitochondria

-Caused by problems in mitochondria – tiny structures that are power stations in every cell

-Particularly affects brain and nervous system

-Usually begins in early childhood

-Early signs include poor sucking ability, loss of head control and loss of acquired motor skills or movement

Science is researching three-parent IVF to address mitochondria

Public consultation has begun into ethics of using three people to create one baby

Technique can be used to prevent mitochondrial diseases passed from mother to child

Baby would have genetic information from two parents and donor woman

About one in 200 children born with faulty mitochondria

 

http://www.channelstv.com/home/2012/09/21/the-woman-who-lost-all-seven-children-to-mitochondria-a-rare-genetic-condition/?utm_source=&utm_medium=twitter

Ok o nothing wey person no go see. It is well o'jare

they should have opted for adoption after the first couple of loses. Whats the point of bringing a child into the world to die? Kudos to the couple for maintaing their sanity after losing child after child.

This is really sad. I thank God I'm in good health.

If na for naija dem go say she be witch wey dey chop pikin! Before you know wetin dey happen,dem don carry her go TB joshua to give am proper deliverance or them go carry her go meet native doctor wey go tell am to do sacrifice. But you see as oyinbo people find out the root of the problem? Thankfully we have science and technology

crazy

berem: If na for naija dem go say she be witch wey dey chop pikin! Before you know wetin dey happen,dem don carry her go TB joshua to give am proper deliverance or them go carry her go meet native doctor wey go tell am to do sacrifice. But you see as oyinbo people find out the root of the problem? Thankfully we have technology!

Fixed

Na wa ooo

@op..Though it took me alot of time to read it,I think it was worth it... Good knowledge for d public.

WelcOme to naija where they will think it is hands of humans that cause that.

Churches will conclude that it is because witches are pursuing her from her village or generational curse or that she has a covenant with the devil or the prince of the air or mermaid. e.g MFM. God bless Science!

mkmyers45: Fixed

corrected!

God help us.

berem: If na for naija dem go say she be witch wey dey chop pikin! Before you know wetin dey happen,dem don carry her go TB joshua to give am proper deliverance or them go carry her go meet native doctor wey go tell am to do sacrifice. But you see as oyinbo people find out the root of the problem? Thankfully we have science and technology

I love u.......

Must you mention the name of my church and don't you also know that the said disease might be a spare that the enemy cast on her to make her life miserable and by continuous praying and fasting the said sickness will vanish...You need a guidian to advice you on spiritual matters mtcheeew

solidbroda: Churches will conclude that it is because witches are pursuing her from her village or generational curse or that she has a covenant with the devil or the prince of the air or mermaid. e.g MFM. God bless Science!

berem: If na for naija dem go say she be witch wey dey chop pikin! Before you know wetin dey happen,dem don carry her go TB joshua to give am proper deliverance or them go carry her go meet native doctor wey go tell am to do sacrifice. But you see as oyinbo people find out the root of the problem? Thankfully we have science and technology

But if na T.B Joshua handle her case, God for intervene. Her seven children for still dey live now. .instead of the research wey oyibo use dem do.

berem: If na for naija dem go say she be witch wey dey chop pikin! Before you know wetin dey happen,dem don carry her go TB joshua to give am proper deliverance or them go carry her go meet native doctor wey go tell am to do sacrifice. But you see as oyinbo people find out the root of the problem? Thankfully we have science and technology

Science and Tech found out d root of d problem but hasn't any solution...GOD has d solution to evry prblm.truly,i say unto u,d day dat woman tells God about her prblm,dat's d day she will become a happy mother of children!

at a time like this Ben Carsen came into d scene. am urging d doctors out there to look more critocally into this matter

acidosis™:


But if na T.B Joshua handle her case, God for intervene. Her seven children for still dey live now. .instead of the research wey oyibo use dem do.

am not saying TB joshua can't handle her case or God can't heal her.am just viewing it from the nigerian perspective regarding her predicament, what people would say about her and profering solutions to her problems.

Love stories like this. Shows people will believe anything.

Only the Lord can console here

Dis topic says,for us dat r alive n healthy,we av 2 giv GOD d glory for keepin us alive to dis very moment.

Eeyah!! but that Edmund suffer sha.. Siezures that could last for days!?!? Chei i cant even imagine the pains...SMH.. & what a strong woman.

acidosis™:


But if na T.B Joshua handle her case, God for intervene. Her seven children for still dey live now. .instead of the research wey oyibo use dem do.

You mean Tuberculosis Joshua...

When foolish Yahweh is able to protect his churches from the bombs of Boko Haram, maybe I'll believe that bullshit..
Let's keep saying 'our God will never fail' while our society crumbles and Dame Patience is in Germany recovering/resting/dying...

A society where the priests/fathers have become marriage counsellors, healers and motivational teachers is simply doomed.

leeland: Dis topic says,for us dat r alive n healthy,we av 2 giv GOD d glory for keepin us alive to dis very moment.

glogift: Only the Lord can console here

I'm sure annointing oil, tithe and fast for don kill una if to say na una go through this experience..

binger: Science and Tech found out d root of d problem but hasn't any solution...GOD has d solution to evry prblm.truly,i say unto u,d day dat woman tells God about her prblm,dat's d day she will become a happy mother of children!

Science knows the root and has the solution. The only thing God knows how to do is pretend to answer your prayers.

If your pikin die, na God will. If im survive, to God be all the glory.. see 419....

akigbemaru: WelcOme to naija where they will think it is hands of humans that cause that.

A country that believes that picking a call will kill them...

Imagine....

Fear of the unknown rules everyday. And of course it should, when the government makes no effort whatsoever to protect or take care of its citizens. Instead the citizens have merely become political numbers, useful only during voting season.

The crooks and pastors see them as only fit for slapping, delivering, praying and fasting and of course tithes and offering..

Satan left Nigeria a long time ago.. he needs not interfere anymore..

^^^^@musqeeto.... Chai,see as person dey vex.,but you could probably have been more polite in your criticism,afterall u are never going to convince anybody with this your blahblahblah. People are free to believe whatever they want and it‘s nobody‘s business.

Alaafia l‘oro:
^^^^@musqeeto.... Chai,see as person dey vex.,but you could probably have been more polite in your criticism,afterall u are never going to convince anybody with this your blahblahblah. People are free to believe whatever they want and it‘s nobody‘s business.

my bro, i been dey polite.. if i allow dis vex pass as e dey, na jdjdjdbeixjfntkrjdhfijtkidbn i go dey type...

Plenty crase people dey road, na d dangerous ones dem dey put for psychia hospital.. 'Our' superstitions and mentality is killing us....

@Muskeeto, I was taken aback by you calling YAHWEH Himself *oolis* in your comment, though I have seen quite a number of people insult "men of God" via their comments but insulting GOD Himself is unbelievable. Is it that you don't fear God or I don't even understand? I don't know what you have passed through or happened to you in life, but whatever it is, an axiom says " We have never seen this before, is nothing but a means of frightening the victim". Please, don't insult HIM before whom you will stand to give account at the end of your sojourn here on earth. In super story's voice "We are nothing but pencil in the hand of THE CREATOR".