CHARGE Syndrome is a complex combination of extensive medical and physical difficulties that differ from person to person.
Babies born with the syndrome often have life threatening birth conditions including complex heart conditions and breathing problems. Most have some level of hearing and vision impairment and require a feeding tube for some period of time. Many surgeries and months in hospital are often required especially in the first few years of life. Approximately 1 in 6 will die before the age of 5.
The CHARGE Syndrome association run a bi-annual conference for families and professionals. These are very important to families to connect with each other as well as hear from a range of specialists. The association tries to make it as affordable as possible however must cover costs getting professionals from overseas which can make costs add up.
The next conference is in May 2018 in Melbourne and as an organiser I wound like to make the conference as affordable as it can be. Please consider donating if you can. No amount is too small. I am very grateful for the people who have already donated. Thank you!
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