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Little Ricky was born in April 2018 to Tristan and Caitlin, who were looking forward to welcoming their second child after recently getting engaged.

Soon after Ricky’s routine arrival, he began to have unexplained seizures, and so his parents began the long journey of testing to find the cause of the seizures.

After four months, Ricky was diagnosed with a very rare genetic condition called Cyclin-Dependent Kinase-Like 5 (CDKL5).

CDKL5 is a genetic disorder characterised by seizures, developmental delays, and severe intellectual disability. It is caused by mutations in the CDKL5 gene, which is found on the X-chromosome. Due to the location of this gene, this disorder mainly affects girls, making Ricky incredibly unique.

Ricky is now almost four-years-old and has been through an incredible journey of resilience as he and his family endeavour to find the best way to treat and live with his rare condition.

“When we first arrived at Queensland Children’s Hospital, we were so incredibly overwhelmed, but thankfully the staff were fantastic and explained as much as they could to us,” Ricky’s dad, Tristan, explained.

“His diagnosis has changed our lives forever – we are now full-time carers – but Ricky is very resilient.”

Ricky has undergone lumbar punctures, MRIs, medication changes, and a number of procedures and operations for his condition with more to come. He is under the care of many teams at Queensland Children’s Hospital, including neurology, respiratory, paediatrics, ophthalmology, ENT, and palliative care just to name a few.

Ricky’s condition means that he cannot perform any tasks on his own. Ricky is nonverbal and has little to no control over his body movements as well as being fed via a PEG. He has cortical vision impairment which means he is unable to process what his eyes see.

Thanks to our supporters, we have been able to support Ricky and his family throughout their journey, including recognising his strength and courage through all his medical appointments and procedures with our Bravery Beads program.

Despite everything, Ricky is a brave and resilient little guy having recently started Kindy at Narbethong Special School – a day that his parents were never sure they’d see.