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."

Hannah took Minnie to A&E and she was diagnosed with infantile spasms and given anti-seizure medication.

But after the medication made Minnie sick she was blue-lighted to Crosshouse Hospital, Ayrshire.

Hannah said: "Minnie was deteriorating. Her whole body now moving, twitching and tensing – she couldn't bend her arms or her legs."

Minnie was then taken to Glasgow Queen Elizabeth and diagnosed with movement disorder, dystonia and dyskinesia.

She had to have a gastric tube fitted as she wasn't able to suck or swallow.

Hannah said: "Every hour that went by Minnie became so unrecognisable due to the bloating and puffiness of the steroid treatment."

She came home in July 2023 with a feeding tube and a positional wheelchair as Minnie could no longer hold her trunk or had any form of head control.



Minnie's seizures continued to increase and she was formally diagnosed with epilepsy and later with drug resistance epilepsy.

Hannah then learned Minnie was missing 21 genes and one of these genes was SCN2A - which is related to epilepsy.

Minnie was in and out of hospital with seizures - which could be up to 34 a day - and was diagnosed with cerebral vision impairment in December 2023.

Hannah said: "Throughout all the diagnosis's we have had this really hit me hard and I just bawled my eyes out. "

"Why Minnie? What else can this horrible, horrible disease take from her?"

"Seizures then became an everyday thing from one type to another we had no control – medication couldn't get control. Neurologists couldn't get control."

In April 2024 an MRI showed that Minnie's white matter is starting to waste away due to a severe form of epilepsy called developmental and epileptic encephalopathies.

Hannah said: "This crippled me, us all – this meant that epilepsy was what had caused this horrific regression in Minnie, our Minnie."

The family now don't know how much longer they will have with Minnie and are trying to find funding to adapt their home for their little girl.

Hannah said: "When I am home alone, I have to take Minnie everywhere with me - from the toilet to the garden hanging out washing. "

"Epilepsy has taken over every form of normality we once knew."

To donate to help Minnie and her family go to https://www.gofundme.com/f/minnie-may-granger