Fundraising for Xander

Citriodora Gardens will open to the public this weekend to fundraise for a local child with a rare genetic disorder.

In April this year, Xander Williamson was diagnosed with Pitt Hopkins Syndrome (PTHS), a rare genetic disorder affecting a specific gene in chromosome 18, called TCF4.

There are about 600 confirmed cases wold wide, with Xander the 11th diagnosed in Australia.

Children with the syndrome typically have a happy, excitable demeanour, frequently smiling and laugher.

PTHS is characterised by developmental delay, possible breathing problems of episodic hyperventilation and/or breath holding while awake, recurrent seizures/epilepsy, gastrointestinal issues, lack of speech and distinctive facial features.

Children have poor muscle tone and many never walk independently.

PTHS is considered an Autism Spectrum Disorder, and some individuals with Pitts have difficulties with anxiety, ADHD, and sensory disorders.

PTSH children are considered non-verbal. The syndrome has traditionally been associated with moderate to severe cognitive impairment, however true intelligence is difficult to measure given the motor and speech difficulties.

Thanks to augmentative communication and more progressive therapies children can achieve so much more than initially thought.

Melissa Williamson said while Xander has made good progress through weekly therapy including physio, OT and speech, the family have a long way to go and additional intensive therapy is needed.

Xander’s family would like to take him to the NAPA Centre in Sydney which runs an intensive three-week program.

A block of intensive therapy costs about $10,000 and the family hope to take him to the centre for treatment three times a year.

Located at 711 Old Telegraph Rd East, Crossover, Citriodora Gardens will open on Saturday and Sunday, November 18 and 19 from 10am until 4pm, with Devonshire teas, sandwiches and baked goods available.

Metal art will be on display thoughout the garden and all works will be available for purchase, with all proceeds supporting Xander.