Schoolgirl’s condition ‘not well understood’, says Whitehead mum

Leah Goss (9) from Whitehead.  INCT 35-723-CON
Leah Goss (9) from Whitehead. INCT 35-723-CON

A Whitehead mum whose daughter was diagnosed with a serious autoimmune disease is hoping to raise awareness of the condition.

Nine year old Leah Goss suffers from Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS).

The Whitehead Primary School pupil was diagnosed with the condition in July 2015. “As she continued to deteriorate rapidly it became apparent there was more than PANDAS in action,” said her mum, Debbie Goss.

“Further tests in the Royal Victoria Hospital showed Leah was critically ill with NMDA Encephalitis.”

In the months that followed, Leah’s overall health began to deteriorate. “Her condition is not well known or understood,” her mum added. “With treatment she has made progress, but it is slow and she remains far from well. Her symptoms range from headaches to sleep dysfunction, hallucinations, acute anxiety, auditory and visual changes, and various cognitive and behavioural symptoms - all these were normal before Leah became unwell.”

Since Leah’s diagnosis, the community in Whitehead has given “overwhelming support” to fundraising towards her treatment.

Leah’s Fund, set up in October 2015, helped pay for a visit to a US specialist, as well as funding rehabilitation.

The Whitehead youngster is continuing to undergo treatment, but faces long term damage as she battles her symptoms daily.

“She remains out of school for the second year running and misses out on much of ‘normal’ childhood,” said her mum.

In order to raise awareness of the condition, Debbie purchased 50 copies of the book Brain On Fire by Susannah Cahalan, who endured NMDA Encephalitis.

As well as distributing the book among family and friends, Debbie has made copies available at both Whitehead and Carrick libraries, along with a number of information leaflets from The Encephalitis Society.

Jillian McFrederick, Carrickfergus Branch Library Manager, said: “Libraries NI is delighted to receive the very generous donation of 50 copies from Whitehead mum Debbie Goss of Brain on Fire: My Month of Madness, a memoir by author Susannah Cahalan.

“By donating these copies of Susannah Cahalan’s memoir, Debbie is hoping to raise awareness of the condition which if left untreated can lead to permanent damage.

“At the heart of every library are staff members who regularly connect with young and old alike and offer them information and support - and these books will be the ideal way to raise awareness of Leah’s illness as we wish her well with her treatment and recovery.”

Library members can also request the book at any other branch.