Help little Van and his family

One year ago, Claire and JB received the news that no parent wants to hear. They were told their beautiful 14-month-old baby Van has a rare genetic condition called Angelman Syndrome.

Angelman’s is a neurological disorder affecting 1 in 20,000. Children with Angelman’s need extensive therapies to do the things we take for granted, like walking, talking and even swallowing. Other symptoms include lacking sleep beyond 1-2 hrs a night, debilitating seizures, tooth decay and low-muscle tone. Since they struggle to communicate, health issues can quickly become severe and often lead to hospitalisation.

We are reaching out to ask for your help and donations, big or small, to support JB and Claire as they adjust and come to terms with their new life. Since receiving Van's diagnosis, their world has changed dramatically, with weekly health appointments, therapy and hospital trips. Children with Angelman’s never learn to live independently and require full attention 24 hours a day, seven days a week. As a parent, there are no words to express the emotional, physical and financial stress this has on a family. Van is currently two years and four months old and still can’t crawl, walk, or say any words. He requires extensive therapy sessions to reach his full potential, which means that JB and Claire have had to cut back on work significantly so they can keep up with the demands of Van's therapy. Some of the funds raised will cover the costs of these constant trips to the city and the time needed to take off work in order to attend health appointments.

Van recently had to undergo extensive dental surgery due to the enamel on his teeth not forming properly, and (because the NDIS doesn’t cover dental) this cost Claire & JB $8,000. More dental surgery will be required early next year and further into the future when his adult teeth come through so the funds will ease a massive financial burden for the family.

We also hope to raise funds to buy Van an iPad to help him with his learning and future communication.

Van is the light of Claire and JB’s lives, and even though their journey has not been easy, they consider themselves lucky to have such a ray of sunshine to get them through. Anyone who has met darling Van will know how loving, joyful and gentle he is and how much happiness he brings to those around him.

We ask if you are unable to donate, please share.

Our heartfelt thanks and gratitude for your support.

❤️

Connie & Rhiannon

Connie (cousin to Claire) & Rhiannon (sister to JB)