This is a heartfelt appeal to help us save Sienna from debilitating Doose syndrome - a rare, catastrophic, medication resistant form of epilepsy. She’s a little girl who loves dancing, who also endures thousands of seizures a month. She also has an ultra-rare genetic disorder (CHD2) and we, her parents, have moved countries, quit jobs and depleted our savings in a search for help for our little girl.

Can you help Sienna to further regain the beautiful personality buried beneath this awful illness? With your help we can get her dancing shoes and princess dresses on again - every little bit will be enormously appreciated.

Sienna’s epilepsy journey

Following her diagnosis in Australia in 2022 at age 2.5 (shortly after the birth of her baby sister Zoe), Sienna did not respond well to medication and went from a happy, sociable toddler who loved music, stories, puzzles and trampolines to a shadow of the little girl we knew - enduring thousands of tonic clonic/drop myoclonic seizures. She required 24-hour care. We had to remove all hard-edged furniture from our home and put down soft mats, often keeping Sienna in a helmet to keep her head safe from the multiple face-smashing seizures she had daily, causing countless bloody noses, split lips, banged heads and emergency room visits. At her worst, Sienna, endured a truly terrifying month-long “status epileptus” where the brain goes into a state of permanent seizure. Sienna was basically catatonic and had to relearn how to walk and talk.

Grasping at the hope of better care from US-based paediatric neurologists, we packed up everything and moved. Better options of treatments had a marked effect on Sienna and coupled with a ketogenic diet and natural therapies she has managed to recover some but not all of her developmental skills and speech. There’s still a long journey ahead of her.

What help is needed now

Caring for Sienna’s needs (24-hour care, highly specialised medically prescribed food, medicine, medical supplies and specialist therapies) is hugely expensive. There is no funding for most of her medical supplies and any therapies. And on top of this, one of us currently needs to be caring for her at all times, making supporting our family difficult. We’re humbly asking for your help in funding these everyday costs as well as the following treatments for Sienna:

· a 3-week intensive care program at a functional neurology practice that uses chiropractic and functional neurology to help very sick kids (USD$30,000)

· ongoing neurological-focused chiropractic care program (USD$15,000)

We would be so grateful for any amount you are able to contribute and if you aren’t able to donate at this time, sharing our story with friends and family would mean the world.

Update as of May 2024: Thank you SO MUCH to everyone in this amazing community who has shared and donated so far - our family is forever grateful to you ❤️‍ with the funds we have received, we have been able to book our amazing warrior girl in for a 2-week intensive at a functional neurology center in Austin, Texas coming up in September and we couldn’t be more excited. However, this will exhaust all plus more of the funds we have received, without covering things like flights and accommodation. We would appreciate so much if you could share, share and share again, and allow us to give our girl every opportunity to get rid of these seizures and allow her a life with less of a struggle and more opportunity for joy. THANK YOU lovely people!