Wheels for our ‘one-in-a-million’ Tilly

Wheels for our ‘one-in-a-million’ Tilly

Our 12-year-old daughter Tilly was born ‘neuro-typical’ or - as others would say - ‘developing normally’. On the weekend of her 9th birthday she contracted life threatening Herpes Simplex Virus encephalitis (1), resulting in a massive brain injury, which stripped her bare of all of her skills other than breathing.

Long periods of hospitalization and home-based rehabilitation followed. Two years after her initial illness she became our ‘one in a million’ child – and was struck down by Anti-NMDA Receptor encephalitis (2). Her second attempt at full rehabilitation was thwarted by ever increasing epilepsy/seizures called Lennox-Gastaut syndrome (3) that remains largely resistant to medicine, diet, CBD oil and her VNS implant (4). The doctors are now talking about medicines that are only in the trial phase.

Tilly has many seizures every day. She is a tween with no privacy or independence, as she needs monitoring 24/7 and we must hold her hand everywhere she goes to prevent falls and further brain injury.

Finding independence and joy

But there is so very much more to our ‘one in a million’ gal. In our family she is/was the leaper, cart wheeler, dancer, swimmer, rock climber, surfer and speed demon. Known to thrill dad and terrify mum! Unfortunately, all of these adventures or ‘free-spirted’ activities are now too unsafe. As parents we are distressed to see our dynamo-gal spending so much of her life indoors and unable to have the fun she so loves so much, especially with her beloved friends.

There is a light!

We are so excited to have discovered a way to give Tilly back some of her independence, and to engage in ‘normal’ tween experiences with her friends and family in a safe way.

The Hase Pino tandem recumbent bike (5) has a proven track record of providing joy to kids with seizures - as seen in this wonderful clip about ‘Camille’s Bike’ (6). With an ‘adult’ captain at the helm to provide safety, Tilly cannot fall under any circumstance - even if she has a seizure while riding.

However, with a price tag of around $10,000 (depending on the exchange rate) this imported custom built bike is beyond most families’ piggy banks. Of course, we figured we’d be eligible to source funding through the Australian National Disability Insurance Scheme – but after an exhausting 12 months of applications, complaints, reviews and letters to Ministers, we were unsuccessful. Don’t get me started!

Blessed by our community

We’ve learnt from Tilly that nothing comes without determination and never giving up. Fortunately for us, we’ve been supported by many people in our community who have encouraged us into fundraising. And this path finally seems to be working for Tilly. We are overwhelmed and overjoyed to be partially supported to purchase a new bike for Tilly by The Board Meeting (7).

The final lap home

Our goal now is to raise as much of the $13,000 as we can in the next 5 weeks. This is to cover the cost of the bike, shipping costs, bike assembly fees, sales taxes, car carrier system and accessories (i.e. pedal clips/panniers/flags). Any funds raised above these expenses, will be streamed into taking Tilly on ‘micro’ cycling holidays and for equipment/resources to benefit all of her fellow students within the public high school special unit that she attends.

We thank you so much for being part of this story and send out a big hug. Remember as the kids used to say 'sharing is caring.' Many people cannot contribute but maybe could use their social media to 'Share' which is an awesome way to be supportive.

As a family we want to fill Tilly’s life with joyful memories, as a counterbalance to everything she has experienced and lost. As Camille writes in her poem about her Hase Pino: ‘Let my universe grow into everywhere.’

We promise to post updates so that you can share with us as this wonderful adventure unfolds.

Fun fact:

Tilly's favourite song at the moment is "I'm Still Standing" performed by Taron Egerton - a totally appropriate anthem considering what she has been through in the past 3 1/2 years!

Further information:

(1) https://www.encephalitis.info/herpessimplexvirusencephalitis

(2) https://www.encephalitis.info/anti-nmdar-encephalitis

(3) https://www.epilepsyqueensland.com.au/lennox-gastaut-syndrome

(4) https://www.epilepsy.org.au/about-epilepsy/managing-epilepsy/treatment/vagus-nerve-stimulation-vns/

(5) https://queenslandrecumbent.com/hase/pino-allround/

(6) https://www.rad-innovations.com/video-hase-bikes-pino---camilles-bike.html

(7) https://www.theboardmeeting.org.au

Photos:

-Tilly after her VNS operation
-Tilly in Year 5 stacking her claim on her future
- Roller skating prio to her illness
- Cartwheeling prior to her illness
- Riding her birthday bike prior to her illness
- A recent trip to intensive care with intense seizures and a collapsed lung
- Blurred by a seizure
- The Hase Pino