Help Emma, my sister, get suitable car for wheelchair lift

As many of you know my sister Emma has a beautiful little special girl named Aryana (and of course we cannot forget to mention her little sister Ayla). Emma is a solo mother of these two beautiful girls. Aryana is 8 years old and remains fully dependent on Emma for all her needs. Ayla is a healthy 5 year old and challenges Em as any normal little 5 year old does. To be honest I do not know how she does it!! It is Groundhog Day on a monumental level. 

 

Aryana has a rare genetic condition. Her actual chromosomal deletion is 12q13.3-15. For your own context, 12q refers to the long arm on the 12th chromosome (which we all have) and the numbers 13.3-15 are the deleted genes. As far as we are aware there are only a handful of people worldwide who share the same micro deletion as Aryana. There is no known name for this micro deletion and Aryana falls under the acronym SWAN - Syndrome Without A Name. SWAN Australia is a global organization and very much known amongst circles of those who live with genetic disorders. 

 

Her disability encompasses GDD (Global Development Delay), very small stature, behavioural issues, hypotonia, non-verbal, non-ambulatory, and PEG fed (feeding tube surgically placed directly into the stomach). She also has a congenital heart defect which will eventually require surgery. 

 

Emma says Aryana is her “never say never child”. Meaning we have no idea what to expect for her future, but if her recent progress is anything to go by, she will keep astounding us with her little achievements, which for the majority are all the everyday things we take for granted. As her immediate family we have all grown to appreciate and cheer the little wins for Aryana. Ayla being the head cheerleader!!

 

Aryana is a cheeky, happy, and resilient girl who loves school and getting out and about but lives a restrictive life due to the huge logistical load required by Emma to simply leave the house. Her (and Ayla’s) access and inclusion to community and everyday activities would be blown wide open if given the opportunity of having a wheelchair accessible/modified vehicle for her mum. 

 

Emma’s current car has served her well, but with it getting older, having various issues and it not being suitable for wheelchair access, there is a sense of urgency to get her a new, safer one that would be wheelchair access friendly and ready for the lift installation should the opportunity come up sooner. 

  

This brings me to the purpose of the fundraiser. For Aryana to have more inclusion to the big wide world, Emma needs a car suitable to have the wheelchair lift modifications done e.g. Kia Carnival. The car must be compliant with NDIS rules for the lift installation to be funded. That is by the time Aryana’s name comes up on the waiting list (approximately 2 years or sooner) the car needs to be no older than 5 years old. So, when we buy a suitable car, it needs to be no more than 2-3 years old.

 

I am reaching out to see if you can help, even in the smallest way, make a suitable car achievable for Emma, Aryana, and Ayla. Any donation you could give will be greatly appreciated and would contribute to a life changing circumstance for Em and the girls. xx