In memory of Alec
Your support can make a difference for all kids with dementia
Alec Morrice
Alec has sadly lost his battle to Sanfilippo. He had Sanfilippo Syndrome Type C. In honour of Alec, his family have asked if you can help by contributing to our campaign to raise funds to progress critical research, care and advocacy for all childhood dementia conditions, including Sanfilippo syndrome.
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 loved camping. He liked to run but became unsteady on his feet. His mum, Michelle, says a smile from Alec made the hardships of the day dissapear. If only Sanfilippo would disappear.
"Alec entered the 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 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 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 did not treat Alec differently to his sister Sienna. Of course, some days were harder than others, but it is amazing how a smile and a cuddle from Alec, made all the 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
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A big thank you to our supporters
The real heroes who are kindly helping us achieve our goal.
Leanne & Keely Reid
Des Ridgill and Kathy Riches
Happy 19 th birthday Alec love from Uncle Des and Kathy
Kathleen Riches and Des Ridgill
Katherine Roberts Roberts
Gen Olsen
Ellen Rosenblatt
Jack Tuttle
Heroes Hollywood
Bryce Saltmarsh
I?m in awe of you Alec and Michelle.
Emma & Paul
Elizabeth Farrell
Brisbane Marathon Volunteers
Anna Laegel
Mahalah?s family
Big hugs to Alec. Love from the Dolby family
Vinaya Lakkoju
Hope this helps. Sending love.
In memory of the most amazing young man who taught us all about compassion, resilience and how to enjoy life to the max. You are now free but you will never be forgotten. Much love.