A Whitehead mum has spoken of her family’s distress after their eight-year-old daughter was diagnosed with a rare neurological condition.
Leah Goss, a pupil at Whitehead Primary School, suffers from Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.
Leah used to be very active, very independent and it was like overnight she became a different child
Known as PANDAS, the autoimmune/neuropsychiatric condition is caused by the strep bacteria.
Speaking to the Times this week, Leah’s mum Debbie told of how the once-active youngster has been facing debilitating neurological symptoms which have kept her housebound since her diagnosis in July.
“I hadn’t even heard of PANDAS before Leah was diagnosed; it’s very unusual and can cause things like OCD and facial tics,” said Debbie, who also has a nine-year-old son, Dara.
“The onset of it was very sudden; Leah used to be very active, very independent and it was like overnight she became a different child.”
Doctors believe Leah developed the rare illness following a series of kidney infections.
As a result of the condition, the schoolgirl now suffers from chronic anxiety, to the extent that she cannot leave the house.
“She hasn’t been able to go to school for months, and she doesn’t even play the same way she used to. Her anxiety is crippling,” Leah’s mum said.
“The impact on our family has been huge; I am self employed and currently unable to work.”
If left untreated, the disorder could lead to permanent damage to the brain.
Despite this, there is no specific treatment for the condition in Northern Ireland.
“PANDAS is a recognised illness but there’s no treatment protocol for it here,” added Debbie.
“In other parts of the world they use intravenous plasma transfer but that treatment is only available in Northern Ireland for other illnesses.
“The paediatric consultant at the Royal referred to Great Ormond Street Hospital, but if this is unsuccessful we may have to head to the US for treatment.
“We have felt very isolated in this situation.”
Debbie, along with her husband Dwyer is hoping to raise the £15,000 towards an initial consultation for Leah, with the hope of funding a treatment plan through the NHS.
Over two-thirds of the target has been reached through online donations.
“We’ve been totally overwhelmed by support both in money and offers of other fundraising events,” Debbie said.
For more information or to donate to Leah’s appeal, visit https://crowdfunding.justgiving.com/leah-goss-1