Help for Maddie

https://epilepsyfoundation.org.au/understanding-epilepsy/epilepsy-syndromes/rasmussens-syndrome/

Maddie, my little angel with a heart of gold, underwent major brain surgery in November 2022, following almost 18 months of progressively aggressive seizures, some causing irreversible brain damage. At their peak, Maddie was experiencing over 30 daily.

After extensive trials on a variety of medications to treat her suspected focal epilepsy, Maddie received the devastating, rare and life-threatening diagnosis of Rasmussen Encephalitis.

Her specialist recommended urgent brain surgery (hemispherectomy) to separate the left-hand side of the brain to the right side of the brain to save her life and improve her quality of life.

Postoperatively, Maddie was unable to recognise her mum and brother, a heartwrenching period, but Maddie overcame the odds and with incredible determination and fighting spirit she recognised. After 3 weeks Maddie spoke her first word post-surgery, and 3 months post-surgery she has a vocabulary of about 35 words.

With the scar from the surgery healing up, Maddie's rehabilitation is extensive, and she will need therapy for the rest of her life because of the surgery and partial right side paralysis. She needs to relearn everything again, walking, talking, swallowing food and drinks.

Our current home is no longer suitable for my little family. As a single mum who took temporary leave from work to be Maddie's full-time carer, along with supporting her brother. Our bills are mounting due to Maddie being wheelchair bound, our current house not being suitable, nor is our transport, which poses a massive hurdle in getting Maddie to her daily therapies.

I'm not used to reaching out for help, but I have realised there is no way to make my resources stretch to cover our family's significant medical cost, let alone find another place to live or undertake the $40,000 - $70,000 of modifications required to make a wheelchair vehicle.

I'm reaching out for help, not for myself, but because my children need access to the basic things many many people take for granted - somewhere suitable to live, transport to move around and medical support, daily costs going back and forth to the hospital.

Every small amount will assist us in saving for a suitable wheelchair-accessible vehicle for my family to let Maddie travel to her appointments, social outings and more, without additional hurdles

thank youRasmussen encephalitis