Warrior welcome pack
We have created a gift pack to welcome new families into the CHARGE syndrome community and to let them know they are not alone.
CHARGE syndrome is rare with an occurrence of 1 in every 10-15,000 births. It is a complex genetic disorder causing multiple birth defects and sensory deficits (hearing, vision, balance, smell, taste). Babies are often born with serious and life threatening medical problems. They will have many surgeries in their first year and will be cared for by multiple medical and allied health specialists in their early years.
CHARGE syndrome has varying degrees of severity and there may be a delay in diagnosis.
We know anecdotally that once diagnosis is made, families are desperate to find support and information. As CHARGE syndrome is so rare, families will seldom find another child like theirs in their community, and it will be challenging to find local health professionals who know about CHARGE syndrome.
We want to reassure new families that there is support available, and that their new baby is a welcomed warrior of the CHARGE syndrome community.
The gift pack includes a book: A multi sensory toy, Special, by Melanie Dimmitt, Queensland made crocheted blanket from Bobble & Stitch, a tea gift set by Sydney’s Organic Merchant, and a welcome letter.
Can you help us to create these important welcome packs?
We are a not for profit volunteer parent-led operation. We rely on donations to fund programs like this. Can you help? Each pack costs $100, which includes the postage. We wish to create 10 this year, ready to send out to new families, as soon as we hear about them.
Donate directly, or get in touch by emailing m.rich@chargesyndrome.org.au
Know someone* who has just received their CHARGE syndrome diagnosis?
To request a pack for a family, email us at admin@chargesyndrome.org.au.
* For families in Australasia only.