Amara-Jane fighting her rare diagnosis

Amara was only 18 months old when we discovered a lump and bruising in-between her eye and nose. After 4 misdiagnosis we finally had an MRI done which confirmed that Amara has a rare tumor growing called Myofibroma.

About 1 out of 150,000 children are diagnosed with these tumors which can make them difficult to treat. They are benign but can grow massively and quite aggressively. They usually show up in the head and neck but can develop more anywhere in the body.

Unfortunately amara's has grown on her face, pushing her eye out of place causing double vison as well as crushing her nasal bone.

She had her first surgery in May 2021 which we believed was successful at removing the tumor but left her with no right nasal bone and a deviated septum causing some breathing issues on top of having large tonsils and adenoids. Because of this she will require nasal reconstruction when she is a bit older.

'the next day after first surgery'

3 weeks ago we had some bad news with her MRI post op which shown that her tumor has grown again. Surgery is booked for the end of August but also means we have to watch this tumor grow all over again. Causing all the same issues plus potentially more.

Unfortunately doctors can't give us an outcome for amara with this diagnosis, and unsure weather the tumor will grow again after surgery. They have stated that if it does amara will require chemotherapy treatment instead of invasive surgery as this will be her second surgery in 3 months.

Travelling back and forth from hospital with unpredictable outcomes has left amara's mum (myself - Annalyse) unable to work and struggling financially with costs for hospital and home. Amara's dad Rhys even changed jobs to be closer to home for his girls.

I wanted to start a gofund me for Amara to raise awareness about Myofibroma as well as any small donations to help our family right now would be so so appreciated. ❤