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"Loving Ben is not the challenge. The challenge is ensuring him his rights and the services he needs."

Today marks the 10th anniversary of World Down Syndrome Day, a global awareness day celebrated on the 21st of March every year. The date, which represents the three copies of chromosome 21 that are unique to people with Down syndrome, has been officially observed by the United Nations for the past 3 years. Today, activities and events will be taking place all around the world to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities. The theme for 2015 – My Opportunities, My Choice – promotes equality and empowerment for people with Down syndrome through assistance, protection and support.

Ben is my big brother. Born 3 years after him, I wasn’t there for his birth or the early years of heart surgeries and ICU. I didn’t understand that he was in any way different from me until I began to learn at a faster rate than him. And over the years I started taking care of him instead of him taking care of me.

I knew the person before I knew the condition. I knew the person before I even knew how to pronounce Down syndrome, or could remember that that’s what he has. He’s like any brother. Yeah he bugs me sometimes. I bug him! That’s what siblings are for.

Baby Maddy with her big brother and sister.

Ben has grown up to be a charming, sensitive man with incredible depth of character and a ridiculous sense of humour. Like any person he has his bad days too. He can be stubborn beyond belief, grumpy, and downright annoying.

Keep reading: To the Australian couple who abandoned their son with down syndrome.

Through all the good times and the bad, Ben has taught me tolerance, compassion and unconditional love, and has brought my family together in a fundamental and harmonious way. But this unit requires hard work and determination. The transition to adulthood has certainly been a bumpy ride. For Ben, communicating his feelings and expressing himself emotionally seem particularly difficult.

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Having a carer role shouldn’t be sugarcoated. It can be incredibly demanding, testing and confusing. For those hours, that person is your world. Your sense of self shifts to incorporate the needs and wants of a whole other individual – a state of mind that’s hard to step out of. One thing’s for sure: I need Ben as much as he needs me. He keeps me grounded and is part of who I am.

Ben helping out at the Collingwood children’s farm.

Loving Ben is not the challenge. The challenge is ensuring him his rights and providing him with the services he needs. People with Down syndrome have the same rights as anyone else: to grow to be happy, content and able to reach their developmental potential; and to be accepted and loved for who they are.

Ben and others who have Down syndrome need extra support and services. Unfortunately, this support isn’t always there and the services he needs are either inadequate or simply don’t exist. While my family is financially stable, we’ve learnt that money can’t buy services that don’t exist.

Each year the voice of people with Down syndrome, their families and carers grows louder. But there is still so much more we can do. With appropriate health and education services, greater support and more opportunities, people with Down syndrome can look forward to long and fulfilling lives as valued contributing members of their families and the broader community.

If you would like to donate to Maddy’s supporter page for Down Syndrome Victoria follow this link.

Funds raised will go towards:

– Support for families with a new baby with Down syndrome

– Electronic newsletter which provides updates on relevant information and upcoming events

– Support and resources for students with Down syndrome and their teachers

– Training and development for health professionals

– Ongoing facilitated peer support networks

– Mentor programs, self advocacy and training for adults with Down syndrome

– Education sessions

– Library of Down syndrome specific resources

– Advocacy for people with Down syndrome to all levels of government

About Ben: Ben volunteers at the local children’s farm, looking after and feeding the animals. His favourite things to do are draw, watch action movies, listen to music and read car magazines. His favourite actor is Arnold Schwarzenegger. We hope to one day take Ben to America to meet him.