Issy has been diagnosed with dyskinetic quadriplegic cerebral palsy. This means she cannot walk, or talk. She is a prisoner in her own body. She also suffers from a range of related conditions and discomforts including seizures, strabismus, hip dislocations, dystonia, pain in her muscles, sensory processing disorder and difficulty regulating her temperature. I understand that it is possibly overwhelming to read about, but what all these things really mean, is that Issy will never get to experience life in the same way as you or I. Despite the challenges, Issy’s light shines bright, and she is very engaged and aware. She smiles and engages with people and the world around her in her own unique ways.
The chair - Recently Issy has begun to learn to drive a powered wheelchair. Gaining this independence is becoming increasingly important for Issy as she grows, and finds new ways to experience the world around her - just like any child. For Issy, the wheelchair enables her to gain confidence, independence, and promotes her growth and development. It is a wonderful opportunity for her happiness and quality of life.
The vehicle - It has become evident however, that to transport Issy and her wheelchair, I need to purchase a new vehicle. These vehicles must comply with numerous safety requirements and standards. Quotes for second hand vehicles suitable for transporting powered wheelchairs that meet the criteria we need to be scripted range from $40’000 - $60’000. This will however, suit Issy’s needs for many years. It will allow us to attend appointments and school, enable her involvement in the community, and accomodate her physical growth.
The funding - We are lucky to have the support of our local Cerebral Palsy League (CPL) organisation in applying for additional funding, however there will certainly be a considerable financial gap. We have submitted numerous applications for additional funding to a range of organisations, such as Variety QLD and the Brisbane Broncos, and we’re hopeful we receive a kind and helpful response. Some ($9000) government funding is likely to be available to us under the Medical Aids Subsidy Scheme (MASS) and we are in the process of compiling the application for this funding as well. The NDIS will be rolled out in our area next year, so at this stage, is not of any assistance to us.
I understand we all have our own challenges in life. From a front row seat I have witnessed Issy face her challenges, which have been greater than I ever could have imagined. I didn’t expect to be with her on this journey, but I feel privileged to share it with her. She has taught me much about determination, bravery, and positivity. Watching her beautiful way win over the hearts of people she meets has become apart of my daily experience.
Issy needs your help, and any contribution or sharing of Issy’s story, will be accepted with grace and gratitude. Every little bit helps. I will keep you updated with any developments as we move towards our goal. Thanks so much for joining us on our journey - I am very appreciative of your time and support, and I know that Issy is too.
Lauren and Issy x.
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