Henley is the most beautiful boy who has already captured many hearts. He has a cheeky sense of humor, loves to play and loves his family.
Henley lives in a small town called Coolamon, 40kms from Wagga Wagga with his dad Sean, Mum Alicia and 3 year old brother Darcy.
Henley is currently on the lifesaving drugs program and has weekly enzyme replacement therapy at Westmead Children's Hospital 5 hours from his home.
While there is no cure for Henley's rare genetic disorder , bone marrow transplant will give Henley more quality of life and add years to his life. A bone marrow transplant has many risks but remains the best treatment. Henley's brother Darcy will be his bone marrow doner and give him a better chance of life.
In the next few weeks Henley will start a road that no child, let alone a 1 year old should have to go down. Henley will have aggressive chemotherapy followed by bone marrow transplant. Henley will be isolated in a room in the oncology ward for 3 + months due to being severely immunosuppressed. Henley will have to stay in Sydney for around 6 months if no complications arise before he can return home and continue weekly visits to Westmead for monitoring.
Henley's mum is a nurse and midwife.
She will take time off work to care for Henley in hospital for the first few months of his treatment while dad and Darcy travel up every weekend (6 hours drive each way).
Once Henley is home he will not be able to attend daycare for 1-2 years due to his lowered immunity which will require him to be cared for at home. Henley's future is unknown due to his rare disorder.
The funds raised will help Alicia and Sean to be able to be able to fund 2 households , cover weekly travel, help with lost wages due to unpaid leave and manage the day to day costs of living.
The organisers are Margaret Bell (Grandmother) , Kirri Stevenson (Alicia's cousin),
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- Judy Benson
- Alexandros Mylonas
- Angela Fitzsimmonds
Organizer and beneficiary
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