Andreas. I wouldn’t change you for the world, but I would change the world for you
 
Before Andreas was born,I honestly didn’t know much about Down Syndrome.  Actually, I knew nothing at all. My first and foremost goal here is to create awareness and educate everyone I can on  what it is like for me and many people, to have a child with Down Syndrome.
 
I want to share with you the ins and outs of our daily life and celebrate Down syndrome and the journey it is taking me on with my son Andreas.
 
I want to raise money for Down Syndrome Victoria by walking 100 km over 5 days along the Great Ocean Road, walking with my work colleagues and my aunty. For me this challenge will last 5 days. For people with disability, they are challenged in many aspects of their lives daily. Together, we can help work towards creating inclusiveness of all people.
 
 
Raising a child with Down Syndrome was not what I envisioned in my future, but I wouldn’t change it for the world. With this brings many challenges and triumphs that can be different to the average child. I feel blessed to be raising Andreas. He teaches me more than I could ever have imagined I would be learning about life.
 
Andreas was born in 2017. He was immediately transferred to the NICU ward of another hospital that could better cope with his complex needs. Andreas was soon diagnosed with Trisomy 21 and Global Development Delay. He spent the next 4 weeks and 6 days in Hospital. He left hospital on World Down Syndrome Day.
 
 
Andreas had many complex medical needs. Some common for T21, that being heart complications and needing oxygen via a CPAT machine. Andreas would also need to be fed via a nasal gastric tube as his low muscle tone meant it was very hard for him to suck. Andreas could not regulate his body temperature. His blood cells resembled those of leukaemia. We would wait a long 3 months before leukaemia could be confirmed or clear this diagnosis.
Thankfully, he was cleared. He is still monitored and checked regularly for this.
 
As with many T21 babies, often they begin their lives fighting poor health. I feel lucky.
 
Andreas is now 4 and 2021 is his year to strive and reach many of his goals. His goals are very different to many of his 4 year old friends. We are working towards walking and standing independently, developing his self-feeding skills, teaching him new sounds and translating them to words and increasing social participation with others. He took his first independent steps on his birthday. This was a long awaited milestone that brought so much joy.
 
 
Andreas is a happy loving kid a lot of the time, but don’t be fooled. A general misconception is to think people with T21 are always happy. This simply is not true. Andreas is currently non verbal which can cause him extreme frustration as people can’t understand what he is trying to communicate and this leads to some challenging behaviours and aggressive outbursts. This is particularly apparent with other children as they do not understand Andreas and how he is different to them in some ways.
 
 
Andreas has worked very hard and pushes his limits every day to get to where he is today. As his mother I am so proud of him and all that he achieves and the milestones he accomplishes, which is why I am going to really push myself to walk 100 km over 5 days. I know this will be physically hard and mentally exhausting and then after a few days, my life will be back to my normal. People with disability, are challenged every day of their lives. Like every other parent out there, I just want my son to be Independent and have a brilliant life filled with love, happiness and good health.
 
 
I am fundraising this money for Down Syndrome Victoria because of the work they do, their constant supports for people with DS, families and friends of loved ones with DS, as well as educating the community and always pushing for inclusion . They provide workshops on many topics for Parents and People with DS, their T21 Adult education &Training also Club 21 social group as well as supporting pre-natal diagnosis, new parents and grandparents
 
Here some facts about Down Syndrome
 
Down Syndrome is a genetic condition, they have a copy of the chromosome 21 which means they have 47 Chromosomes instead of 46
 
There are 3 types of down syndrome, Trisomy 21, Translocation and Mosaicism
 
Trisomy 21 is the most common
 
Down Syndrome occurs in all races and economic levels
 
People with DS have an increased risk of certain medical conditions such as congenital heart defects, respiratory and hearing problems, childhood leukemia and thyroid conditions
 
A few common physical traits include low muscle tone, small stature, an upward slant of the eyes, a single deep crease on the centre of the  palm on the hand, every person is different and may present these characteristics to different degrees or not at all.
 
People with DS attend school, work and can make decisions that affect them, have meaningful relationships, vote and contribute to society in many ways.
 
People with Down syndrome want the same things as everyone else, the best start in life, good education, meaningful employment, somewhere to live an active participation the life of the community.