Emma’s story began seven and a half years ago…
After years of inconclusive results, surgeries and hospital emergencies, Emma is finally getting out in the world, ready to take it all in. In the past, Emma was unable to participate in most activities because she was always too sick or little. Now that she can understand more and is able to play and interact with her environment, her mental health is a lot better and she can participate in the world. However, we have found that there are not many things in the community for little kids with disabilities.
Emma is one of eight children in Australia with a rare condition called Ohdo syndrome, which is a one in a million lottery ticket. We have won the front seat ticket to a HUGE rollercoaster ride that has had double loops, ups and downs and everything in between. This has been a journey that no one is ever prepared for and it has provided me with an incredible new perspective about the world, people and inclusion.
Emma’s condition affects her fine and gross motor skills and speech. She is non-verbal and has an intellectual disability along with a list of health issues related to her heart, brain, feet and knees. She has respiratory issues and challenges with eating. All of which Emma has valiantly fought with a smile on her face every single time.
Now that Emma is finally out in the world, we have swapped hospital battles with inclusion battles. As we walk the streets of our neighborhood, shopping centre and playgrounds, we have realised she has no access to adequate toilet facilities where we can change a child aged seven and a half. I have to change her on the floor or in the boot of my car. We go to playgrounds where the only things she can do is go on the swing and visit shops that have no ramps for a wheelchair. In my experience, people have never said anything disrespectful, but they have assumed a lot of things and asked a lot of questions. Since when is it anyone else’s problem what others have or don’t have?
As a single mum without any family, I have always tried to get out into the community to make sure Emma and I are around people. This has become harder recently because of COVID-19. I am part of a mother’s group that we sadly haven’t been able to see for some time. The kids Zoom but because Emma is non-verbal, she is unable to participate. I also played soccer with a wonderful group of mothers but that has also been cancelled, bringing more loneliness to our lives. Emma and I loved going to get our nails done together, but we haven’t been able to do this lately either. We have been limited to our tiny apartment.
Even though our experiences have been tough, Emma has shown me her amazing superpowers and I have taken them and given her powers a purpose. Emma has inspired me to create a book called A very special GIFT where her disability becomes not only the black cloud that we all see, but allows us to discover the superpowers that we want kids to find in themselves: internal beauty, unconditional love and wisdom. I would like this book to celebrate every child in their own unique way and empower them to fulfil their dreams.
You can purchase a copy of ‘A very special GIFT’ on pre-sale at a discounted rate ahead of its launch here.
Please check the Rare Disease page(s) for related Support Organisation(s)