My brother, my inspiration

Recognised each year on 21 March, World Down Syndrome Day raises awareness of the condition. Down syndrome is the name of a genetic disorder caused by a type of chromosomal abnormality. The condition is often characterised by physical growth delay, distinctive facial features and learning disability.  Those with Down syndrome have an increased risk of specific health issues such as congenital heart disease, leukemia and thyroid disorder.  However, many live well into their 50s and 60s.
 

One Young World Ambassador Ethna Elizondo is co-founder of a summer camp for Down syndrome kids called Vuela Más Alto.  On World Down Syndrome Day 2014, Ethna remembers her brother and shares her experience of the condition.

Real heroes, real life

When I was a little girl I used to hear stories and watch movies about super heroes, but I never imagined living with one. [[[image-1 medium right]]]

The best gift I have ever received was my brother Jimmy.

He was special.  He had Down syndrome. Yes, not everything was laughter and joy; yes, sometimes it was pretty hard. But he was light, he was everything my family needed, he was everything I asked for, he was a blessing not only for us but for everyone around him.

During the first months of his life, many people told us he wasn’t going to be able to do many things; that we 'shouldn’t expect a lot' from him. But my brother proved them all wrong.

He learned to water ski, ski, play the drums, swim, dive, he loved to dance, talk and be with people.  He did so many things, so much more than most people do.

You couldn’t be with Jimmy without receiving something - a smile, a hug, a joke, a kiss, a drum roll, a dance, a song, something that made your day different, special and happy. He liked to help people. He gave a little piece of him to everyone he knew.

I have learned so much from my brother. He persevered at everything, always determined to improve.  Thanks to Jimmy, I will always see the world differently, through the eyes of someone who enjoyed every ounce of life.

Challenge yourself

Yet abortion is often the answer to the common perception that looking after someone with Down syndrome is a burden. This is an incredible mistake – it is a blessing to have a baby, brother, nephew, cousin or friend with Down syndrome.

Sadly too, I’ve noticed many people are afraid to interact with people who suffer from conditions such as Down syndrome. Don’t be. Take the opportunity to be with and talk to others like my brother.

If you make the effort; you will understand why these people are extraordinary. If you let them in, share a bit of your time and self, they will change your life forever and you will learn to celebrate the simplest of things.

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I don’t regret having a brother with Down syndrome.  He is my inspiration every day and it is his memory that drives me to work with others - and their families - that have Down syndrome. This August, 50-60 kids with Down syndrome will attend the summer camp I co-founded. Here we encourage them to aim higher and get involved in activities they never thought possible.

If you’ve never met or interacted with someone with Down syndrome, start now.

Our capacities are not that different and any difference will be overshadowed by the reminder of what is important in life.

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My brother passed away in December 2011. He was 16 years old and had been suffering from leukemia since June 2009. Despite being in remission since December 2009, he relapsed mid-November 2011. Two weeks later, he went to heaven. He was a fighter.