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Mirryn was born with a genetic disorder that led to her rare Batten disorder, which affects only between 11 and 17 children a year in the UK. Mirryn could have sat up and moved independently (see photo), but gradually became paralyzed

A girl who has a rare form of & # 39; child dementia & # 39; developed, died in her mother's arms when she was two.

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Mirryn Cunningham, from West Lothian in Scotland, heard her favorite story when she breathed her last, her mother said.

Mirryn was born with a genetic nerve-damaging condition and subsequently developed a disease called Batten's disease, which made her unable to move or see properly.

Her mother, Vicky Cunningham, said in April that she was looking at the disease, which destroyed the brain in the same way as dementia, taking her daughter little by little.

Mirryn, nicknamed & # 39; Miracle Mirryn & # 39; by her family. died on Sunday morning in a children's hospital in Kinross.

Mirryn was born with a genetic disorder that led to her rare Batten disorder, which affects only between 11 and 17 children a year in the UK. Mirryn could have sat up and moved independently (see photo), but gradually became paralyzed

Mirryn was born with a genetic disorder that led to her rare Batten disorder, which affects only between 11 and 17 children a year in the UK. Mirryn could have sat up and moved independently (see photo), but gradually became paralyzed

Mirryn had spent the last eight weeks of her life in a hospice after her family realized that there was nothing they could do to delay her illness and that she needed 24-hour care
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Mirryn had spent the last eight weeks of her life in a hospice after her family realized that there was nothing they could do to delay her illness and that she needed 24-hour care

Mirryn had spent the last eight weeks of her life in a hospice after her family realized that there was nothing they could do to delay her illness and that she needed 24-hour care

& # 39; She fought hard for a long time, & # 39; Cunningham said to the BBC.

& # 39; She got her favorite story and she was hugged by mama and she just put her head on me and she took her last breath, a huge massive breath, and she was.

& # 39; No more pain. No medication. No drops. No oxygen. Mirryn only. & # 39;

Mirryn had been in the hospice for eight weeks and received 24-hour care because she could no longer sit up or eat.

WHAT IS BITTEN DISEASE

Batten disease is an umbrella term that is used to describe various disorders that are called neuronal ceroid lipofuscinoses.

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These diseases prevent the body from removing waste cells from the brain and can lead to an accumulation of proteins and fats in the brain.

This accumulation prevents living cells from working properly and disrupts the connections between crucial nerves. Alzheimer's disease damages the brain in a similar way.

As a result of this gradual nerve damage, patients – diagnosed as children – suffer from epileptic seizures, brain damage, muscle weakness and paralysis, vision and blindness problems, difficulty swallowing and speaking, and ultimately death.

Bat's disease is rare and was only believed to affect between 11 and 17 children a year in the UK, with around 100 to 150 children believed to live with the disease.

The disease is caused by a genetic mutation and is therefore incurable and most people diagnosed die in childhood or young adulthood.

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sources: Batten Disease Family Association and Batten Disease Support and Research Association

Bat's disease is believed to affect between 11 and 17 children per year in the UK and is diagnosed before the age of five.

Medically known as neuronal ceroid lipofuscinosis, it is a collective name for various nerve disorders caused by one of a number of genetic mutations.

They prevent the body from removing waste cells in the brain, which means that they build up and disrupt the connections between nerves that direct movements and feelings around the body.

The resulting symptoms include seizures, blindness, paralysis, and difficulty speaking or swallowing.

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Batten disease is incurable and always deadly. Sufferers usually die in childhood or young adulthood, according to the Batten Disease Family Association.

Mirryn & # 39; s family and friends labeled her as a & # 39; wonder & # 39; because she did & # 39; things that were medically impossible & # 39; and helped try out a drug that can be used in the future for end-of-life care.

Doctors experimented with giving the anti-epileptic drug Keppra, which may now be given to other children with similar conditions.

Mrs. Cunningham said: “Hopefully she has changed other things, another little baby or someone with a similar neurological problem.

& # 39; They won't fit that much and she pushed them to the limit where they had to look at other areas where they could help her. & # 39;

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The mother of two first noticed that there was something wrong with her daughter when she stopped trying to hold her hand or rock her bouncer at the age of 10.

Mrs. Cunningham said her daughter had a & # 39; miracle & # 39; was because she had helped doctors try out a treatment that might be used in the future for other children with similar diseases.

Mrs. Cunningham said her daughter had a & # 39; miracle & # 39; was because she had helped doctors try out a treatment that might be used in the future for other children with similar diseases.

Mrs. Cunningham said her daughter had a & # 39; miracle & # 39; was because she had helped doctors try out a treatment that might be used in the future for other children with similar diseases.

Vicky Cunningham, pictured with her daughter, said that Mirryn fought hard for a long time & # 39; before finally dying of the devastating disease & # 39; child dementia & # 39;

Vicky Cunningham, pictured with her daughter, said that Mirryn fought hard for a long time & # 39; before finally dying of the devastating disease & # 39; child dementia & # 39;

Vicky Cunningham, pictured with her daughter, said that Mirryn fought hard for a long time & # 39; before finally dying of the devastating disease & # 39; child dementia & # 39;

Batten's disease prevents the body from being able to protect vital nerve cells and as a result, people with the disease suffer from convulsions, paralysis, swallowing and speech problems and eventually die young

Batten's disease prevents the body from being able to protect vital nerve cells and as a result, people with the disease suffer from convulsions, paralysis, swallowing and speech problems and eventually die young

Batten's disease prevents the body from being able to protect vital nerve cells and as a result, people with the disease suffer from convulsions, paralysis, swallowing and speech problems and eventually die young

Doctors discovered that Mirryn's muscles became weaker when she had to grow and that parts of her brain died.

An MRI scan showed that she also lost a fatty substance in the brain called myelin, which forms a protective shield around the outside of crucial nerve cells.

Her condition deteriorated at an alarming rate, Cunningham said, and her daughter stopped making noises and began to deteriorate.

The family said they were trying to make Mirryn's remaining months as happy as possible. & # 39; We took her when we could and brought her to Deep Sea World and we had tea parties and sleepovers, & # 39; said Mrs. Cunningham.
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The family said they were trying to make Mirryn's remaining months as happy as possible. & # 39; We took her when we could and brought her to Deep Sea World and we had tea parties and sleepovers, & # 39; said Mrs. Cunningham.

The family said they were trying to make Mirryn's remaining months as happy as possible. & # 39; We took her when we could and brought her to Deep Sea World and we had tea parties and sleepovers, & # 39; said Mrs. Cunningham.

Doctors experimented with the administration of the anti-epileptic drug Keppra, which her mother says can one day be administered to other children with similar conditions.

Doctors experimented with the administration of the anti-epileptic drug Keppra, which her mother says can one day be administered to other children with similar conditions.

Doctors experimented with the administration of the anti-epileptic drug Keppra, which her mother says can one day be administered to other children with similar conditions.

Mirryn & # 39; s family had raised money to pay for equipment to help her and the fund - which has reached nearly £ 5,500 - is now going to her funeral

Mirryn & # 39; s family had raised money to pay for equipment to help her and the fund - which has reached nearly £ 5,500 - is now going to her funeral

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Mirryn & # 39; s family had raised money to pay for equipment to help her and the fund – which has reached nearly £ 5,500 – is now going to her funeral

The family realized that there was nothing they could do to help the toddler, so she tried to make her remaining months as happy as possible.

& # 39; We just made all the memories we could make & # 39 ;, said Cunningham.

& # 39; We took her where we could and brought her to Deep Sea World and we had tea parties and sleepovers. & # 39;

The family had raised money for equipment to help Mirryn and the fundraiser, who has reached nearly £ 5,500, will now be used to pay for her funeral.

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To give a visit the GoFundMe page.

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