Stories of affected children and families

Cody Sheppard

Cody SheppardCody Darren, our first child was born on the 28th April 2004. A day after Cody was born he was admitted to the intensive care unit for further assessment due to poor feeding, high muscle tone, and little responsiveness.

In May 2004 Cody had an MRI taken of his brain, and the medical staff at the hospital had advised us that he had Dandy Walker syndrome which meant that Cody would be affected physically. The results were going to be sent to The Sydney Children's Hospital for a second opionion.

During the next couple of days we believed that our dream of having a family was no longer a dream, and spent days questioning our faith and asking why us? We couldn’t understand because looking at Cody he was so beautiful and looked so normal.

“We couldn’t imagine how we were going to get through the rest of the day let alone the rest of our lives.”

We couldn’t imagine how we were going to get through the rest of the day let alone the rest of our lives. Our family and friends were very supportive; however, no one really knew what we were thinking or feeling inside, and how much we were hurting. We tried to be positive as we were advised that Dandy Walker syndrome would only affect Cody physically, and that his mental capability would be normal.

A week later the results from The Sydney Childrens hospital were received by The Canberra Hospital. We were advised that Cody had Cerebellar Hypoplasia not Dandy Walker Sydrome. We were advised at this time that Cody would be affected both physically and mentally. As we were just starting to pick ourselves up it felt like our hearts were ripped out again but this time it felt ten times worse. We were advised by family, friends and medical staff that the best thing we could do now was to take Cody home, and treat him as a normal baby.

We took Cody home about two to three weeks after he was born. We were required to tube feed him for about two weeks before he learnt to suck from a bottle. This was such a big achievement for us and Cody. We started to treat Cody as a normal baby, and as hard as it was started the bonding process.

We perform daily physio and speech therapy on Cody, and attend weekly sessions with ACT Therapy. Both the speech and physio specialists at ACT Therapy are wonderful and so supportive, and we always walk out of ACT Therapy on a positive note.

Cody with his therapists from Therapy ACT

Cody with his therapists from Therapy ACT

Cody is now 8 months old, and to be honest, we still have our bad days and I’m sure we will have these for the rest of our lives. But we are now bonding with Cody, and he is a part of our family and we would never change that. The little things that Cody has already achieved have meant so much to us.

Cody has started to smile and the day that he looked at us and smiled brought tears to our eyes. Yes, Cody has a disability and yes he will do things differently to other normal children his age, but one thing for certain is that he is our special little boy and he is beautiful. We are scared about what the future holds for us as a family, and for Cody as an individual but Cody is here now, and is special to us in his own little way. All we can do is to take a day at a time, and continue to do daily physio, and speech therapy, and continue to give him lots of love and support.

Note – Cody passed away in September 2007. His brother Dylan was born in May 2010. The medical profession compared Dylan’s MRI scans of the brain against Cody’s. The medical profession advised that they wrongly diagnosed Cody at birth and that he didn’t have Cerebellar Hypoplasia. Both Cody and Dylan had/have Pontocerebellar Hypoplasia Type 2.

Darren and Sonia Sheppard
(Cody’s parents)

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