Tot is the only child in the world with rare condition and has 34 seizures a day
SWNS
2024-08-04
Views 52
A baby who lost weight in the womb is the only child in the world with a rare condition which sees her have up to 34 seizures a day.
Minnie Granger, two, was born weighing just 4lbs 4oz at 37 weeks - after doctors noticed she had lost 80g in the womb and induced her mum, Hannah Granger, 29.
The tiny tot was taken for genetic testing and diagnosed with very rare chromosome deletion and 21 missing genes.
Parents Hannah and Gavin, 30, a mechanic, later found out no one else in the world on the database had the same gene and chromosome mutation as their little girl.
The condition causes Minnie to suffer with life-limiting severe epilepsy which is causing brain damage.
Her family don't know how long she'll have left but want to make as many memories as they still can.
Hannah, a full-time carer for Minnie, from Glasgow, Scotland said: "Minnie is a miracle and Minnie’s life matters.
"We were advised that no-one on the genetic database has the same gene and chromosome mutation as Minnie - meaning she is the only person in the world.
"She is one of a kind.
"Every seizure Minnie has takes away some sort of development.
"She's such a good wee girl.
"She's got loads of personality.
"She could be having a seizure one minute and smiling the next."
Hannah was placed under consultant care at 36 weeks after a scan revealed Minnie had lost weight in the womb.
She was induced at 37 weeks and Minnie was born on September 2, 2022, at 8.05pm.
Doctors noticed her small dysmorphic features - low set ears and a low birth weight - which could indicate something was wrong.
Hannah said: "Minnie’s temperature was so low I was allowed to hold her – she was wearing three cardigans, two hats, swaddled with three blankets and still on a hot mattress.
"I was meant to be in this bubble with my new beautiful girl but my head was now all over the place."
Minnie was taken for genetic testing and at 14 weeks old the family were told she had a micro deletion of chromosome region 2q24.2q24.3.
They were told it was very rare and unknown but children with similar deletions suffered from many developmental delays.
Hannah - who is also mum to Finley, 11, and Kai, five - said: "Our world as we knew it changed and would never be the same.
"By this time Minnie could sit in her highchair, hold her head up was starting to wean, smiling and giggling watching her brothers.
"We knew she would never have the life her brothers would have, and we knew she would possibly never get married and have a job but this interaction was amazing."
But in June 2023 she had her first seizure.
Hannah said: "With Minnie snuggled on my chest having a nap I felt her body go tight and tense and stiffen up.
"Lifting her off me around 30 to 40 seconds later she did it again. I instantly knew this was wrong."
To donate to help Minnie and her family go to https://www.gofundme.com/f/minnie-may-granger
Minnie Granger, two, was born weighing just 4lbs 4oz at 37 weeks - after doctors noticed she had lost 80g in the womb and induced her mum, Hannah Granger, 29.
The tiny tot was taken for genetic testing and diagnosed with very rare chromosome deletion and 21 missing genes.
Parents Hannah and Gavin, 30, a mechanic, later found out no one else in the world on the database had the same gene and chromosome mutation as their little girl.
The condition causes Minnie to suffer with life-limiting severe epilepsy which is causing brain damage.
Her family don't know how long she'll have left but want to make as many memories as they still can.
Hannah, a full-time carer for Minnie, from Glasgow, Scotland said: "Minnie is a miracle and Minnie’s life matters.
"We were advised that no-one on the genetic database has the same gene and chromosome mutation as Minnie - meaning she is the only person in the world.
"She is one of a kind.
"Every seizure Minnie has takes away some sort of development.
"She's such a good wee girl.
"She's got loads of personality.
"She could be having a seizure one minute and smiling the next."
Hannah was placed under consultant care at 36 weeks after a scan revealed Minnie had lost weight in the womb.
She was induced at 37 weeks and Minnie was born on September 2, 2022, at 8.05pm.
Doctors noticed her small dysmorphic features - low set ears and a low birth weight - which could indicate something was wrong.
Hannah said: "Minnie’s temperature was so low I was allowed to hold her – she was wearing three cardigans, two hats, swaddled with three blankets and still on a hot mattress.
"I was meant to be in this bubble with my new beautiful girl but my head was now all over the place."
Minnie was taken for genetic testing and at 14 weeks old the family were told she had a micro deletion of chromosome region 2q24.2q24.3.
They were told it was very rare and unknown but children with similar deletions suffered from many developmental delays.
Hannah - who is also mum to Finley, 11, and Kai, five - said: "Our world as we knew it changed and would never be the same.
"By this time Minnie could sit in her highchair, hold her head up was starting to wean, smiling and giggling watching her brothers.
"We knew she would never have the life her brothers would have, and we knew she would possibly never get married and have a job but this interaction was amazing."
But in June 2023 she had her first seizure.
Hannah said: "With Minnie snuggled on my chest having a nap I felt her body go tight and tense and stiffen up.
"Lifting her off me around 30 to 40 seconds later she did it again. I instantly knew this was wrong."
To donate to help Minnie and her family go to https://www.gofundme.com/f/minnie-may-granger
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