19 June, 2023: Little Maya’s surgery in Spain seems to have been an outstanding success.
We at the MMWIF are extremely proud and honoured to have made this all that much easier for the family with Maya now able to continue her life without the challenges her condition would have encumbered her with.
Congratulations to Maya and her loving family.
April 28, 2023
Maya lives with her family in regional NSW, around 3 hours from Melbourne and 5 hours from Sydney. Maya is 7 months old and was born with a very rare condition affecting her upper eye lid. It is a Congenital Cranial Disinnervation Disorder, where a misconnection occurs between the nerve supplying her upper eye lid, and that supplying her jaw, causing synkinetic movements of her eyelid with jaw movement such as sucking, smiling, opening her mouth etc.
It is known as Marcus Gunn Jaw Winking Syndrome. Maya has a significant wink and also resting Ptosis, where only part of her eye is visible when not moving her jaw, due to partial eyelid closure.
A Spanish Ocular Plastic Paediatric Surgeon has pioneered a new surgical technique to correct the jaw winking and Ptosis, with a once off minimally invasive surgery expected to last a lifetime, with minimal scaring and a high rate of success.
Australia unfortunately has not yet adopted this surgical technique to manage congenital Ptosis or MGJWS. In fact, there are only a couple of surgeons worldwide who perform this corrective surgery on infants and children.
Without this corrective surgery, Maya has a high risk of long term visual disturbances, including impaired ocular and visual development, which can cause significant physical and neurological developmental delays, not to mention psychosocial implications.
Surgery is recommended at 10 months of age to ensure no long term implications, which means traveling to Spain in June for surgery. The surgery will be performed on both eyes, to essentially change the way in which Maya will blink. Her recovery involves months of regular lubricating eye ointment, until eventually she will be able to subconsciously blink and close her eyes while sleeping.
Obviously there are additional expenses on top of the actual operation (21K).
This is where the Michael Manion Wool Industry Foundation has stepped in. We are going to cover the airfares, accommodations and other travel expenses to get Maya and mum safely to Spain for the op.
We wish Maya and family all the very best for her operation and recovery.
If you would personally like to help this family more there is a gofundme page you can donate to.
https://www.gofundme.com/f/eye-surgery-for-maya-grace
