Hi my name is Gavin Thomas

We are raising money for our son Lachlan, born on the 20/12/2021. Lachlan has PURA syndrome.

PURA syndrome, also known as PURA-related neurodevelopmental disorder, is a rare genetic disorder which is characterized, but not limited to;

•Widespread developmental delay

•Speech delay

•Balance and walking difficulties

•Hypotonia

•Feeding difficulties

•Epilepsy

•Excessive daytime sleepiness

•Chronic hypothermia

•Apnea

•Hypoventilation

•Kyphosis and Scoliosis

•Visual disturbances including Strabismus and Nystagmus

Lachlan is PEG fed, cannot yet mobilise, and does not verbally communicate. Lachlan requires night time breathing support and continuous monitoring for vomiting incase of aspiration, as he does not yet have full control of his airway.

Most of Lachlans doctors and specialists are located in Sydney and only a few, such as his GP are located in the Illawarra. Lachlan has multiple appointments on a constant basis and this travel to Sydney is very time consuming and costly.

Regardless of these challenges, Lachlan is a very happy-go-lucky boy. His laugh is infectious, he smiles a lot and seems happy within himself. He loves his mum and dad, his older brother Oliver (9) and his younger brother Henry (1). Lachlan is our super star, and continues to surprise and impress us every day.

We are raising money for his general day to day needs and other necessities to maintain his health, happiness and quality of life.

Thank you for taking the time out of your day or night to read this. Anything anyone can give, no matter how big or small would be greatly appreciated.

Kind regards

Gavin, Ellen, Lachlan, Oliver, Henry