Darren and Sonia Sheppard's first son Cody was born on the 28th April 2004 and was diagnosed with a rare condition called Pontocerebellar Hypoplasia type 2. The Genetic Specialist advised and reassured Darren and Sonia, that it would be very unlikely for them to have another child with the same condition. Sonia gave birth to their second child Ben on the 17th of November 2005. They were so relieved that Ben did not have the condition, and they couldn't wait to be parents to him and give Cody a little brother.

Cody passed away on the 5th of September 2007 at the age of three. Through grieving for Cody, Darren and Sonia wished that Ben had a brother or sister to run around and play with. Sonia became pregnant, and was reassured throughout the pregnancy that everything with the baby was perfect. On the 4th of May 2010, Darren and Sonia's third son Dylan arrived. He was diagnosed with Pontocerebellar Hypoplasia type 2. Dylan passed away peacefully in Darren and Sonia's arms on the 29th of March 2012, aged 22 months.

The purpose of this website is to share information about the condition, and to support other families who have children that have been diagnosed with the condition.

This website is dedicated to Cody and Dylan. It is in memory of Darren and Sonia's two beautiful boys who were faced with many challenges during their short life. They will never forget how brave their boys were and their gorgeous smile.

Darren & Sonia Sheppard

12 April 2012

Dylan's story

Dylan Sheppard's story

A couple of days after Dylan was born he was admitted to the Newborn Intensive Care unit for further assessment due to poor feeding and high muscle tone.

Read Dylan's story »

Read Cody's story

Cody Sheppard's story

A day after Cody was born he was admitted to the Newborn Intensive Care unit for further assessment due to poor feeding, high muscle tone, and little responsiveness.

Read Cody’s story »

Cody's last days

Little Cody's last days

Cody was seen by a Paediatric registrar who advised that he had a gastro bug. During the evening they took bloods from Cody and kept him on IV fluids.

Cody's last days »

Dylan's last days

Little Dylan's last days

Dylan was experiencing breathing difficulty and was not feeding. By the evening he developed a high temperature and he was kept on oxygen overnight.

Dylan's last days »