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Just months ago Leah was a happy, healthy girl, but now she can't go out after being struck by a rare brain condition

By Laura Abernethy

Published 24/10/2015

Little Leah earlier this year before her illness
Little Leah earlier this year before her illness

Earlier this year Leah Goss was a happy, healthy and very active child. Now a rare brain condition means she hasn't left her home in three months.

The eight-year-old from Whitehead was struck with a common bacterial (streptococcal) infection last year.

It caused inflammation in her brain and, as a result, she was diagnosed with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) in July.

The condition causes obsessive compulsive disorder, chronic anxiety, severe separation disorder, tics and Tourette's-like behaviour, and if left untreated can lead to permanent brain damage.

Leah has been housebound for three months and she could miss up to a year of school.

Due to her separation anxiety, mum Debbie (32) has had to stay at home with her. Before she became ill, Debbie says Leah was getting top grades at Whitehead Primary School and she was the only girl on the local football team, but she changed almost overnight.

"It's a very sudden onset. It caused a complete personality change and it's incredibly debilitating," Debbie said. "It's like she's a different child. She was very active, sporty and she was incredibly independent. Now she can't leave my side."

Her condition has had an impact on the whole family, including her brother Dara (9).

Debbie explained: "He's still going to school but it's a big change to everyday life for him and he's very upset by it all.

"They were both in lots of clubs and they had a very busy social life, and suddenly that's come to an absolute standstill."

She added: "It's changed life for everyone.

"I'm self-employed and I've had to reduce work massively. I haven't been working for the last few weeks at all because she's been so unwell."

The condition can be managed through long-term antibiotics and an IVIG (intravenous immunoglobulin) transfusion of antibodies, but there is no treatment available for the condition in Northern Ireland.

Although IVIG transfusions are used to treat other conditions here, there is limited knowledge of this specific condition and the family have been told they may have to travel abroad.

Debbie and her husband Dwyer are now fighting to get Leah the treatment that she needs and hope they will then be able to live a normal life again.

Debbie explained: "It's a very rare illness and as a result they have no treatment protocols for it here. We have to leave Northern Ireland to try and find treatment."

Therapy is available in America, and the family are investigating if they may be able to pay for it privately in Dublin or at Great Ormond Street Hospital in London.

They are hoping to raise £15,000 to pay for the treatment as well as travel and accommodation expenses.

In just under a week they have raised almost £12,000, but are hoping that they can get enough money to pay for ongoing care for their daughter.

Debbie added: "That is our initial fundraiser to cover her first consultation, but after that we will have to keep going as her treatment will be ongoing. We've been shocked by how quickly people have helped. There has been so much support within the community and we're so grateful. It's so nice to see that people are so caring."

If they raise the money, they hope they will be able to get treatment for Leah within the next month.

  • To donate to Leah's fundraising campaign, visit https://crowdfunding.justgiving.com/leah-goss-1

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