HELP SOPHIE JOIN IN. SPONSOR OUR RIVERWALK TEAM.

Hi, my name is Sophie, I am 14 years old.  I have Rett Syndrome, a rare neuro developmental disorder. I rely on my loving family to look after all my care. I am wheelchair bound.  I enjoy going to Southport Special School where I like to socialize with my friends using the mirror and  listening to my voice over the microphone. I also love to play with the switches and make the radio play my favourite music- Katy Perry.  Be pushed around on bumpy surfaces in my wheelchair and sometimes I like the thrill in my standing frame.  My favourite activity is hydrotherapy. It is just so great to relieve the pain, and help my bowels go.
I have been practising my Eye Gaze "Look to Learn" program for 18 months now and I'm ready to take the next step.  The Communicator 5 program and Patty-Pagers will help me learn how to eye gaze my needs, as I learn to communicate with the community in the future and control the environment.

About Sophie

Our vision for Sophie is to keep her laughing and smiling and sharing her special magic.  She touches us deeply, as we enjoy our beautiful little angel who never gives up.  We just want to give her the best life imaginable, and distract her from the pain. She fights so hard and proves them all wrong. We just pray for a miracle one day.

Sophie has aquired every terrible symptom on the RETT Syndrome bucket list including Epilepsy, Reflux, dysmotility of the bowel with multiple bowel perforations and complications, continuous jejunal tube feeds,  Scolosis Rods and Osteoporosis. Autonomic Nervous System Dysfunction, Chronic Constipation, Urinary retention and infections, chest infections and breathing abnormalities. The worst thing is the pain, where sometimes Sophie can't leave the house because of the movement disorder.

Sophie's mother attended the Rett Syndrome Communication Forum in May where she was given some tools to help Sophie unlock the frustration she feels and help her  "APRAXIA".  The families that attended were given some "hope" as medically there is no cure. It is a heartless disorder that leaves Sophie trapped in a body that doesn't want to work because every cell in it isn't programmed correctly.

Sophie's Needs

• Special disability swing that is supportive and lined.

• Hoist slings

• Disability modifications at home.

• Weekend respite at Bethany Care where Sophie socialize's with other kids her age and enjoy activities several times a year when she is not sick.

• Communication programs and speech therapy

• Music program

How you can help Sophie:

• We hope that you can make a donation by using the donation button on this website.   You will be sent a tax deductible receipt.

• Spread the word by sharing this page with your family, friends, work colleagues and anyone else you think may be able to assist.

• Raise awareness and collect donations to sponsor Team Sophie at the Annual Riverwalk Brisbane Event on 21st August

• Join us at Riverwalk commencing at 10am leaving from Orleigh Park, West End.  The 5km walk is a picturesque stroll along the Brisbane River followed by a BBQ and activities.  Register online at this link.

We thank the Community of St Mary's and the greater community for their support over the years, as we set our goals for the 2016 Riverwalk.

We thank you for your love and support of our very special daughter, Sophie . If you have any enquiries please contact Tracey or Drew on 0414309969 or email nancydrew77@live.com. Check out Sophie's Support Page on Facebook.

The Developing Foundation commits  90% of funds donated to Sophie's needs. The remaining 10% is used by the charity to cover credit card charges, administration and support expenses.