Hope For Alec

Alec Morrice

Alec has Sanfilippo Syndrome Type C. Without treatment, he will not live to adulthood. You can help children like Alec by contributing to our campaign to raise funds to progress critical research, care, and advocacy for all childhood dementia conditions.

Alec has Sanfilppo Syndrome Type C. There are four types of MPS III Sanfilippo Syndrome including Types A, B, C, D. Type C occurs in only 1 in every 1.5 million live births, while Types A and B occur in 1: 70,000.

Alec loves camping. He likes to run but these days is unsteady on his feet. His mum, Michelle, says a smile from Alec makes the hardships of the day dissapear. If only Sanfilippo would disappear.

Alec entered our world almost two years to the day after his big sister Sienna. On the 8th January 2007, Alec arrived with all the hope we as parents could dream for his future. We had our pigeon pair, both healthy and beautiful. Our hearts were full and our lives couldn't have been more perfect.  

After a long diagnostic odyssey, on the 9th of January, 2015, a day after Alec's eighth birthday, we received the phone call that changed our lives. Alec had Sanfilippo Syndrome MPS III Type C. 

The initial impact of this news was one of shock and despair. We were mourning a loss that hadn't happened yet and blaming ourselves as we are the reason Alec has this condition. We also jumped head first into researching the condition to ensure we were fully informed. We have since realised that drowning in a sea of despair is not going to help Alec and what we want for his future.

We have learned to let go of those things that cause us stress and to enjoy the here and now. We are committed to making a future for our children filled with love and laughter and we surround ourselves with people who love our family and accept Alec. We do not treat Alec differently to his sister Sienna. Of course, some days are harder than others, but it is amazing how a smile and a cuddle from Alec, makes all these hardships melt away.

Our hope is for the advancement of clinical trials to help develop a treatment and hopefully one day a cure for this condition so that children with Sanfilippo can live a life that every child deserves. We hope the wider community can help spread the word and help us to make exactly this happen.

We also hope that our son will be able to live a life surrounded by understanding and kindness. His life may not be the one that we previously dreamt for him but if it is one in which he has no fear or pain, feels loved and is full of things that bring him happiness, we could not wish for more.

Photography: Danielle O'Brien