Scarlett's Smile Fund Raising Appeal

The Rotary Club of Mount Lawley is hosting a screening of Toy Story 4 to raise funds for Scarlett, a four-year-old girl who is the only person in WA identified with GNB1 Syndrome, a rare disease that affects the signalling inside her cells.

As a result, Scarlett is unable to independently move, communicate, or feed herself. As Scarlett gets bigger, it is becoming increasingly difficult for her parents to lift her all the time, so funds raised from this event will go towards a wheelchair-accessible vehicle for Scarlett and her family. The vehicle will make transporting Scarlett so much easier and safer.

How Can You Help?

Bring along the whole family and enjoy a special screening of Toy Story 4 and at the same time make a huge difference in someone’s life!

When and where: The screening is on Sunday 23rd June. The fun begins from 2.30pm at Event Cinemas Morley Galleria and the film will start at 3.30 pm.

Family fun: Dress up as your favourite Toy Story character and enter the fancy-dress competition on the day! There will be a prize for best-dressed adult and child. Face-painting will also be available for a gold coin donation

Buy Tickets Today: Visit www.trybooking.com/BCMJG today to buy tickets to this special screening to raise funds for the Scarlett's Smile Appeal.

I can't make the movie but want to donate...

Any donation, large or small, will be greatly appreciated and you can make fully tax-deductible donations today simply by visiting our Rotary Fund-raising page for Scarlett at https://donations.rawcs.com.au/93-2018-19.

Read Scarlett's story, as told by her family:

All our dreams came true when Scarlett Rachel Elaine was born. She was healthy, with an Apgar score of 9, and although born with a cleft palate and club foot, life seemed complete. Of course, we put these two birth defects down to coincidence and were just the happiest parents in the world.

It wasn't until we were at a pediatrician appointment for Scarlett's reflux, that we heard a word that would soon turn out to completely change our lives forever.

Scarlett was a "HYPOTONIC" baby... What did that mean? What is Hypotonic? Does Scarlett have Hypotonia?

“Hypotonia” seemed terrifying to us. Not only did it refer to a floppy and low muscle tone baby, but quite often indicated a serious underlying medical condition. We pushed to go back to the pediatrician when at 4 months of age, Scarlett couldn't hold up her head, maintain eye contact, fix & follow, grab or even seem interested in toys, and wasn't meeting all the usual milestones. It was very difficult to admit that, although perfect to us in every single way, Scarlett was different and we had to help her.

Scarlett’s life has been a constant flow of medical appointments, tests and therapies. Scarlett had her first surgery at just 8 weeks of age, has been put under general anesthetic several times, and has fought for her life in the Intensive Care Unit more than once. It never gets easier, but she is the bravest little girl we know. No matter what gets thrown her way, she always come back stronger and happier than ever,

The journey to find Scarlett’s central diagnosis and ultimate reason for her challenges has been a long one. Scarlett had every test imaginable. Brain and abdominal ultrasounds, MRIs, cerebral spinal fluid analysis, metabolic tests, a TORCH screen, genetic Microarray, a whole bunch of EEGs (electroencephalogram), lysosomal testing, and more blood and urine tests than we care to remember – BUT it wasn’t until Mum stumbled across ‘Whole Exome Sequencing’ available in America that we eventually found the answer to Scarlett’s challenges. Geneticists here in Perth had drawn a blank, and told us we would just have to wait and see…

BUT we couldn’t! We got in touch with project coordinators from “MyGene2” at the University of Washington, to organise next generation sequencing. AND after all the invasive tests conducted in Australia, all it took was a saliva sample, and a lot of research by Mum, and we got our answer.

Scarlett was diagnosed with the GNB1 Syndrome, a rare disease caused by a mutation on her GNB1 gene. As the disorder affects the signaling inside her cells, Scarlett 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.

There are only 64 individuals (including Scarlett) identified with the disorder so far, and she is the only person in Western Australia. There are no words to describe how life changing getting Scarlett’s diagnosis has been for us! Connecting with other families has meant the world. We are not alone anymore, and there are researchers working towards targeted therapies and treatments. But unfortunately, there is no cure for Scarlett’s condition!

Scarlett is a such a charismatic little girl. She is beyond happy and has a heart of gold and smile that lights up the room. We are so blessed to have her! She may never be able to sit, crawl, walk or any of those things, but our only hope is that we can continue to give Scarlett every possible opportunity so that she can blow us all away with her progress.

As much as we will always reach for the stars, we have to accept in our reality, and look to the future, to what she, and therefore us as a family, will need.

As Scarlett gets bigger it becomes increasingly difficult to lift her all the time. For example every time we need to feed her, bath her, change her nappy, take her in and out of equipment, transport her to appointments, do playtime or her exercises, or take her in and out of the cot etc., it requires a significant amount of manual handling on our part, as Scarlett is now over 16kg. The truth is things like a wheelchair, wheelchair accessible vehicle, hoist and home modifications, need to be considered so that caring for Scarlett is sustainable.

A wheelchair accessible vehicle is one of the biggest purchases we will have to come up with ourselves. At the moment, lifting Scarlett in and out of the car seat constantly, with her uncontrollable movements, can be dangerous, especially for me pregnant. A wheelchair accessible vehicle will make transporting Scarlett so much easier and safer, and make such a big difference to all our lives. But unfortunately, it is SO expensive. This is why we are fundraising!

We would be extremely grateful for any contribution big or small, and can't thank you all enough for your help. Your support means so much!!

Scarlett with parents Marcus and Kate Whitmore

Scarlett with parents Marcus and Kate Whitmore