Three year old Xander needs surgery
Donation protected
Towards the end of 2020 my son Xander was diagnosed with congenital cavernous malformations (or hemangioma) in his brain and since then we have been on a journey to try and determine the likely impacts for him and if the CCM2 gene fault that caused it was inherited or a random variant that started in him.
While we have a long way to go on that journey (including potential testing on Xander's younger brother Kai seen below), on top of that diagnosis, we went on through lots of other test to discover that he also has hearing loss and a speech delay, grade 4 tonsils and a bad case of obstructive sleep apnoea leaving our house sleep deprived most nights.
We are on the public waiting list for surgery but were strongly advised against waiting the 2-4 years it could take. After only a six month wait, we saw a private ENT and have a surgery date in early June (half the time they said it would take, does that even happen?!) to have tonsils and adenoids out and grommets in, I have saved up the majority of the funds needed but could really use some help as I'm running out of time and at my capacity for manageable borrowing.
If you aren't able to donate a few dollars, I would greatly appreciate you sharing this with your networks, I've seen what the power of social media can do, so I'm putting my stubborn pride aside and asking for help.
Thank you so much for reading.
While we have a long way to go on that journey (including potential testing on Xander's younger brother Kai seen below), on top of that diagnosis, we went on through lots of other test to discover that he also has hearing loss and a speech delay, grade 4 tonsils and a bad case of obstructive sleep apnoea leaving our house sleep deprived most nights.
We are on the public waiting list for surgery but were strongly advised against waiting the 2-4 years it could take. After only a six month wait, we saw a private ENT and have a surgery date in early June (half the time they said it would take, does that even happen?!) to have tonsils and adenoids out and grommets in, I have saved up the majority of the funds needed but could really use some help as I'm running out of time and at my capacity for manageable borrowing.
If you aren't able to donate a few dollars, I would greatly appreciate you sharing this with your networks, I've seen what the power of social media can do, so I'm putting my stubborn pride aside and asking for help.
Thank you so much for reading.
Organizer
Sandy Winters-Scheerlinck
Organizer
Dunlop, ACT