Parents say rare disease is 'robbing' Drogheda girl (8) of her childhood

ireland
Parents Say Rare Disease Is 'Robbing' Drogheda Girl (8) Of Her Childhood
Amelia suffers with a rare disease called Juvenile Metachromatic Leukodystrophy (MLD).
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Elaine Keogh

A rare disease is “robbing” an 8-year-old girl of her childhood and life, according to her heartbroken parents.

Over a two-year period, Amelia Donnelly went from stumbling and falling to being unable to walk, losing the ability to speak and swallow, and she could develop childhood dementia.

In April 2020 she was diagnosed with Juvenile Metachromatic Leukodystrophy (MLD), a rare genetic degenerative disease.

“It is not rare when it is one of your own. It has taken her whole life. She is a beautiful little girl, and she has been robbed of everything,” her mother Samantha said from their home in Drogheda, county Louth.

“She is robbed by it. Whatever about us being upset, I feel so, so sorry for her. A child does not deserve that, it is a vicious, vicious disease, it will take everything away until there is no more.”

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Samantha and Amelia’s dad John Paul, have been told her life expectancy may be as little as two to four years.

Amelia's life expectancy may be as little as two to four years. Picture: Ciara Wilkinson

“She wanted to be a vet, I could see a great future for her ahead of all of this,” her mum added.

She said that if Amelia had been diagnosed before she had symptoms, she could have taken part in a clinical trial to delay the onset of the disease, but there is no cure.

She believes Amelia is intellectually unaffected at the moment, but she doesn't know how long before this deteriorates too.

“She is one of five children and one adult on the island of Ireland with MLD,” Samantha said.

“We were in a daze for a few weeks after the diagnosis. It was all like a bad dream, and we were trying to keep things normal, this was all in the middle of a lockdown and it was so hard.

“We take each day as it comes. Amelia can’t talk anymore, she is fed through her PEG (tube) 24 hours a day and has no swallow. She has limited movement in her arms or legs but can’t walk or sit up.”

With their other children Louisa (10) and John (5) they are now trying to create the best possible memories for Amelia.

To help with this her aunt Ashley Darvell set up a Gofundme page with a target of €100,000 has been set up with the aim of purchasing a special car seat and the family are looking at the possibility of sourcing an assistance dog.

Amelia suffers with a rare disease called Juvenile Metachromatic Leukodystrophy (MLD).

The response and support from “family and friends and the whole town of Drogheda and kind strangers has us overwhelmed and grateful. It is making something so hard so much easier to know everybody is behind to give her the best of the days that she has left, we cannot thank them enough,” Samantha and John Paul said.

They are particularly grateful to her aunt Ashley, her school St Oliver’s on the Ballymakenny Road and her SNA Brian.

Samantha said their hope is to “get things to keep her comfortable including additional care she will need down the line. The fundraising means we can bring her to things that she would love to do and we can spend time together as a family cos we don’t know how long she is here for”.

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