Medication needed to keep beloved daughter alive not covered by PBS in NSW

LEXIE HARBOUR is a chilled out, happy 15 month old who is the youngest person in Australia with a genetic condition that is so rare, it affects only 12 people in the country.

Lexie with Cerebral Palsy Alliance’s Anne Cleaver.

YOU could not meet a more chilled out, happy little girl then Kellyville’s Lexie Harbour.

This 15-month-old is Megan and Adam Harbour’s youngest daughter and sister to Imogen, 3.

She is also the youngest person in Australia with the extremely rare genetic condition called Smith-Lemli-Opitz Syndrome.

“Lexie was born premature and weighed 2.8kg at the time,” Mrs Harbour said.

“She also had severe oedema and instead of her gaining weight like the other babies she lost weight and actually came home weighing 2.5kg.

“Straight away Lexie had genetic testing, which came back all clear originally, however I noticed she never seemed to gain weight and then she started having seizures.”

Lexie with big sister Imogen 3-years.

In June 2016, two weeks before Lexie turned six months old, the Harbours’ world was turned upside down with the diagnosis she had SLOS, which means she is unable to make enough cholesterol to support normal growth and development both mentally and physically.

“There are only 12 in Australia and Lexie is the youngest,” Mrs Harbour said.

“With the right medical care a person with SLOS can experience a normal life expectancy, although independent living is unlikely due to possible mental retardation.

“Sadly, children with the most severe cases often die just a few months after birth.

“Our gorgeous Lexie needs constant consultations with doctors, specialists and early intervention therapists, and aids to help her development.

Lexie with Cerebral Palsy Alliance therapist Anne Cleaver.

“She also requires medication, cholesterol therapy, which is not covered by the Pharmaceutical Benefits Scheme in NSW because it is ­considered a nutritional ­supplement and not a ­medication. It costs $97 for 20 days’ worth here in NSW.

“However, because it is ­government funded in ­Victoria and Western Australia it costs $6.20 for the same amount.”

The Harbours are not ­people who normally seek assistance.

In fact, many people in the community have probably already benefited from their generosity to different causes during the years, without knowing it.

However, now the table has turned and it is their time to humbly ask for help, as their family and the wellbeing of their daughter Lexie is “worth it”.

For regular updates on Lexie’s progress go to the Love For Lexie Facebook page.

The family has set up a GoFundMe page to help cover the costs of Lexie’s medical needs, including medication, a standing frame and other therapy she will need throughout her lifetime.

For regular updates on Lexie’s progress go to the Love For Lexie Facebook page.