Meet Willow!

Willow is our 7 year old daughter who has epilepsy, autism, low muscle tone, is non verbal, can only eat pureed foods and has a severe intellectual disability.

She adores being outside and going for walks in her wheelchair, but can't run around and play like other children.

But she LOVES to be on her trampoline and in her swing (at school!)

We are lucky enough to have a wonderful school that she attends when able, and they worked alongside Variety to install an all needs swing in the playground specifically so she could join in on social fun play activities with other students ❤️

We wish to get the same one for home as she has grown out of her current special needs swing and this one will do her for life. With us a family of 4, bringing in less than one income due to Willow's high care needs (she needs one on one supervision 24/7 including when she is asleep) we just can't find funds to provide her one.

Her low muscle tone and intellectual disability means she doesn't have the skills to use a normal swing.

We are absolutely not a family to ask for help of any kind, but we know Willow deserves so much more than we can afford to provide her with ourselves

We are also currently in the process of moving and making a new home (and playground) that is accessible and safe for her as she grows. We are also looking at a springless trampoline as we've had some terrifying near misses with our old trampoline with the padding over the springs not providing enough safety from her little feet dragging when she takes steps.

Any funds raised will go towards her swing

⭐Some background on our strong little girl⭐

Willow suffered from a rare form of childhood epilepsy called infantile spasms at only 4 months old. This took all of her gained abilities away including how to smile and she even ended up with a feeding tube.

We saw a neurologist who ordered lots of testing and we found out she had some genetic abnormalities including thinning of the corpus callosum which meant she was very prone to seizures, learning disabilities, low muscle tone, eating issues and a lot of other developmental delays. There was no cause for these abnormalities, it was an unknown cause. Normal, healthy pregnancy -I don't even drink coffee - even when she was born everything was perfect until we noticed her regressions.

Once the infantile spasms were controlled, she had to learn all of her skills again from smiling, having a bottle and any form of movement, she is still only able to eat pureed and mashed foods as she hasn't learned the ability to chew.

We were told she would likely develop another form of epilepsy at the age of 4 with her suffering her first seizure just before her 4th birthday.

Thanks to her wonderful physiotherapist, Willow can walk for short distances, but has no sense of direction or depth perception so will eratically change direction mid step which can cause her to fall. She is very wobbly on her feet and relies on her wheelchair to get out and about. We are currently trialling a walker to hopefully give her some more independence if she will use it.

This last month, after having her seizures controlled for just over a year and a half, she has had a new bout of health issues and seizures including some different types she hasn't had before along with a lot of upset/grumpy behaviour and being extremely over stimulated.

She likes to punch herself in the head when overstimulated which has resulted in us purchasing a very padded helmet we put on to deter the behaviour. This has resulted in us unfortunately having to take her out of school and all normal day to day activities until we can get some answers.

We are currently waiting for her to be well enough to be put under to get an MRI and blood testing and a new referral to a neurologist to see what has changed.

We have an NDIS plan and a wonderful team of therapists who work around Willow at her own pace - if she doesn't want to do something, she won't! We are so grateful for the adaptive equipment and toiletries we've been funded for with her plan, but of course a swing and play equipment isn't covered which leaves us in a bit of a lurch as anything with the words adaptive or disability will have extra zeros added to the price tag.

Thank you for reading, please share her story around!

We are truly appreciative ❤️

Julie (mum), Josh (dad) and big sister Ella