Hi, I'm Scarlett Whitmore
Scarlett is a beautiful little Perth girl, with the biggest heart and most infectious smile. However, because of a very rare genetic disorder, she faces
a number of challenges. Scarlett is diagnosed with the GNB1 Syndrome, a disorder that affects the signalling inside her cells, so she is affected on a
global level, unable to independently move, communicate, or feed herself.
Scarlett has a number of secondary diagnoses. Unfortunately, she has the most severe form of quadriplegic Hypotonic cerebral palsy, cortical vision impairment,
frontal cortical atrophy, global developmental delays, hearing impairment, osteoporosis, as well as suffering from daily seizures, and uncontrollable
movements and muscle spasms. Scarlett also has severe feeding difficulties and is fed through a feeding tube in her stomach.
Scarlett just loves being outdoors. With multiple appointments every week, and all the challenges she goes through daily, we’ve realised just how important
the simple things are – i.e. just enjoying time as a family. We really just want to give her the best quality of life possible. We have always dreamed
of taking her on a bike ride, and now that she’s become a big sister (and the best ever!) we’re determined to make it happen for both our girls.
We have researched an amazing bike trailer that will allow us to take Scarlett on bike rides, and while we hope to get this through the NDIS we’re
not sure whether they will fund it, and either way we will need an electric bike to make pulling the X Rover and Scarlett’s weight (she is now over
17kgs) feasible. Also, we would absolutely love to get the Hippocampus beach wheelchair one day, so that we can get Scarlett back to the beach (she’s
always loved the water).
We also participate in multiple intensive therapy programs a year and will always reach for the stars. This year we would like to take part in some local
programs, namely ‘Healthy Strides’ and the ‘Rehab ME Intensive Collective’ here in Perth, and work towards Scarlett’s communication and improve her
physical wellbeing. Also, in 2021 we have plans to again venture over to Sydney for another NAPA intensive therapy program which is just life changing!
Her first NAPA intensive therapy program was nothing short of amazing, her head and trunk control improved incredibly well. She also took part in a
NAPA intensive therapy program in December last year, and we saw improvements not only in her motor skills but also with her swallow, which is SO important.
We were able to get off her suction machine (which assists her to manage her secretions) and she has been much more medically stable since then.
However, these intensive therapies come at a massive cost.
A 3 hour per day program would consist of 45 hours of therapy, and costs over $7,000.
Anyways, this is why we are fundraising!
To give our beautiful little girl the best quality of life possible.
WE NEED YOUR HELP.
Any donation, big or small, will make such a massive difference to Scarlett’s life.
Please scroll down to the donation form at the bottom of this page.
We would also appreciate if you could please share this page.
Thank you from the bottom of our hearts, Kate, Marcus and Scarlett XO