About Mia
Mia Runakorwawshe Chikuhwa
Mia was born on 8th November 2011 at King Edward Memorial Hospital in Subiaco. Mia is a family ambassador of the PCH Foundation and the Variety children’s charity. She was selected to be one of 30 children from Perth to participate in a 30th anniversary celebration book for Kalparrin, a PCH department which supports families of special needs kids. 2000 books will be printed and distributed to schools, centres and hospitals around WA. The book will feature stories and pictures of the 30 children – 30 Super Power kids! The launch of the book will be in October 2019, at a huge function and the book then displayed at the state library for 3 months.
Mia's Condition
Mia was diagnosed with a midline cleft lip and palate in utero. Sheonly is non-verbal and non-mobile. She uses a PODD book for communication and has the aid of a wheelchair. Mia has an extremely rare condition which affect a few hundred people in the world. It is not known what she will be capable of n her life. she uses a wheelchair to move around and is unable to stand or sit unsupported. Mia is none verbal and uses a PODD book to communicate. She is currently trialing a hitter communication device as an alternative.
Mia's Therapy
Mia’s ongoing therapy includes seeing 9 specialists at Perth Childrens Hospital for her health care. Mia feeds on a PEJ and only ever has small taste experiences. Mia participates in some other ongoing therapies, physiotherapy, speech and Occupational therapy. Unfortunately funding does not fully cover all she needs to do to maximise her potential and for this we fundraise. A lot of fundraising has to take place in order for Mia to gain the best opportunities through her therapy. Mia also does hydrotherapy and is on the waitlist for hippo therapy. In addition to her therapies in Perth, with our fundraising partners at Lions Club of Victoria Park Mia took part in an intensive therapy in Adelaide in October 2016 and May 2017 at a cost of $12000 a trip. For Mia to realise the full potential of this therapy she needs to go every 6 months but she hasn’t be able to go due to financial constraints.
Mia Runakorwawshe Chikuhwa
Mia is a happy child who brings much joy to those around her. Her main diagnosis is an extremely rare condition affecting a handful of people across the globe. Her main diagnosis, lobar holoprosencephaly, is an extremely rare neuroligcal condition affecting only a handful of people accross the globe. Her other diagnosis include: Diabetes Insipidus, Cerebal palsy GMFCS 5, Seizures, Global developmental delay, Partial absent corpus callosum and Bilateral colobomas of optic nerves.
Mia is supported by the Lions Club of Victoria Park and they assist with the organisation of numerous fundraising events.
She is currently involved in a project called Perth Super Power Kids, which is a picture and storybook of Perth’s 30 kids who live with special needs and/or disabilities. This is an initiative run by Kalparrin, a deprtment of PCH.
Mia is an ambassador for PCH foundation and the Variety Childrens charity.
How our community has helped so far.
Lions Club
We are currently fundraising so Mia can return to Adelaide for another therapy session with Therasuit at the end of the year. Her last Therasuit trip was for three weeks in April 2018.
Our Battle
Financial
The Lions club are custodian to all Mia’s donations and money raised through different initiatives.
Our Hopes
- To purchase a wheelchair accessible vehicle.
- To attend intensive therapy in Adelaide annually.
- To bring more awareness of the condition to the community.