Our Families

Team Eva

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Team Eva is asking for you to contribute towards making Eva's life a joy, not a burden. Eva has Rett Syndrome. We hope to do more than just provide the minimum of therapies and life equipment Eva needs. We have a dream of giving her as much of a chance as possible to live a life with some independence and with as many wonderfully varied experiences that life can offer. But for now, right now, we would love her to learn to hold a spoon to feed herself, be able to play with her toys and be able to tell us what she wants. To do those she needs lots of therapy, communication devices and a supportive chair.

We deliberated about what to say here: do we talk about the sadness of having a child with Rett Syndrome? But we didn't want anyone to feel sorry for us. Do we talk about what an amazing delight our daughter is in our life and how we've changed so much for the better because of her? We didn't want people to think we were glossing over the realities of life with a child with multiple disabilities. So in the end, here it is, a bit of everything!

Eva was born a healthy 3.3kg baby with a perfect Apgar score. She thrived on breastfeeding and sunshine and turned into a fat happy baby who made hilarious giggles at silly things. We were part of a big mothers group and it was here at about 5 months that we started noticing Eva was falling behind the other babies in terms of milestones. As first-time parents we just assumed she'd catch up. By nine months she was staring straight through us and would not engage in play. She stopped babbling, stopped rolling and stopped holding any of her toys. We lost our happy little girl. For almost a year and a half we did intervention therapies through the local hospital without knowing why, and we sang and cuddled Eva as she cried inconsolably for a few hours almost every day.

Then in February 2010 when Eva was 2 1/2 years old she was diagnosed with Rett Syndrome: a debilitating condition that has robbed our child of speech and mobility and left her with a predisposition to Epilepsy, Parkinson's-like shaking, Long QT Syndrome (a life-threatening heart condition), Gastrointestinal issues and Scoliosis, and she has eczema. Now multiple specialist appointments, physiotherapy, occupational therapy, speech therapy and many other interventions are part of her daily life.

But we did get Eva back as well as her giggles, her cheeky smile and her love for the things she enjoys - music, swinging, cuddles and food. And these are what makes her, and in turn us, totally happy. What has been the turnaround in Eva’s condition? She still has Rett Syndrome, but we think all the therapies and good food has made a big difference to her disposition.

We've learnt patience - she for us and vice versa. We've learnt how to prepare nourishing food in textures she can handle and relish. We've made amazing new friends. And our family and old friends have become even closer. We're surviving as best we can on a single income as I stay at home to look after Eva and do daily therapy with her. We don't own a home, we rarely go on holidays, we shop very little but we eat well, live better and love the most we've ever loved. What can I say, it's not a sob story, it's our life. And we love it.

What we don't love is that having a child with disabilities in this country means you spend around $10,000 a year in therapies and interventions that can't be provided publicly. This puts a huge strain on us financially. And that doesn't really take into account (I'm sorry to say it) the ridiculous cost of simple things. A bath chair for example can cost over a thousand dollars! A supportive high/low chair costs over five thousand. And to send her to the only camp in the world that marries oxygen tent therapy and intense physiotherapy would cost us well over $20,000. Yikes.

And that is where you, our wonderful supporter comes in. If you could help by donating to Eva’s ongoing therapies, it would be fantastic. If you could help by passing Eva's story on to others who may be able to help, it would be even better. And what we will do with your contribution is make sure that Eva gets what she needs when she needs it. The Developing Foundation will administer those funds and assist us to purchase the specialist equipment or therapies Eva needs, when she needs them. It is like having our own charity for Eva - whatever you donate to Team Eva they will provide 90% of it for Eva's needs.

This September 11th 2011 we are doing the Riverwalk - a fundraising walk, 5km long ,in West End, Brisbane. This will take the form of sponsorship whereby you could sponsor us to walk those 5km, knowing that every k we do helps provide much-needed therapies and aids to assist Eva’s progress.

And if you'd like to receive updates about Eva's progress or leave her (or us) a message please email us at GdayEva@gmail.com

With thanks,

Emma, Roger and Eva