Elyjah's quilt    (Quilt Open)

Child Interests

Ely loves all things Army, Airforce, Soldiers. He also loves minecraft and the football teams Rabbitohs and the Broncos. And lives for chicken nuggets. Favourite colours would be green or blue.

Biography

Ely was born tiny (5pound) but mighty at the end of 2012, the younger brother of Maddie and Caeleb. And today a big brother to Mahlie. Ely was always busy and fast paced and struggled with language but otherwise was a happy well developing child. Diagnosed with ADHD and Autism at around 6 years of age. Ely enjoyed mainstream school and keeping up academically and physically with his peers. Playing NRL for our local club on the weekends. When Ely was about 7 years of age he experienced a sudden onset headache as he was playing one afternoon. After calling out the house dr and presenting to our local hospital the next morning we were again told it was nothing to worry about and most likely just viral. About 6 months later Ely was lifting weights and mucking around with his older brother when he had a strange “episode” where he glazed over and his arm was straight out twitching. After being assessed at the local hospital we were told it could be a one off incident and to not worry again. Sent on our way after 24 hrs monitoring and some fluids.
Ely experienced a couple more seizures over the next few months each seeming to worsen. After the third one I pushed for further investigation and was offered a referral for an MRI, it was after this we were admitted immediately and told Ely had a CPA AVM -( a large tangle of abnormal blood vessels which place you at high risk of rupture) Elys is in the left side of his brain, which we learnt over the next week was most likely untreatable due to its size and complexity. For the past few years Ely has battled regular seizures, loosing the use of most of his right side, not being able to participate in football or lots of other beloved activities due to the risk of bumping his head or adding extra pressure. Procedures, tests, time off due to illness etc etc. but through it all he has blown us away with his strength and resilience and his wicked sense of humour. Ely recently had a fairly serious brain bleed on the 25/04/25 and spent a few weeks in hospital after developing hydrocephalus and needing 3L of fluid drained over a couple of weeks. Nothing is guaranteed for Ely and so much of his life has changed over the past few years, but he’s handled it and continues to handle it with a positive outlook and a willingness to achieve everything he can and not worry about the rest. TIAs, Seizures, ED visits and never ending appointments, this boy puts up with so much and always with a joke and a cheeky smile. We would be very grateful if he was to be considered for one of these beautiful blankets.

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