Bear Cottage welcomes its first families

For two years, the Moses family has cared full-time for their daughter Sarah, who has Kabuki Syndrome. Kabuki Syndrome is a rare disorder, which can cause a diverse range of symptoms including heart defects, short stature, seizures and some developmental delays. Now for the first time, Sarah's family is able to receive some well-earned respite at Bear Cottage, NSW's only children's hospice.

Bear Cottage at Manly is a place where children with life-limiting illnesses and their families can stay, from time to time, and receive rest and medical care in a home-like environment.

Sarah's family is grateful for the chance to rest and have a helping hand with the care of their daughter. Sarah's Mum Mamie says, "When you have a sick child it's so hard to go anywhere on holiday where you feel safe. Sarah is on 24hr morphine and oxygen, so you just can't pick up and leave. At Bear Cottage we know they are medically equipped to care for Sarah, and we can enjoy a family holiday together."

Head of Care, Louise Mann, says "Families using Bear Cottage for respite care may choose to leave their sick child at Bear Cottage while they have a holiday elsewhere, or stay at Bear Cottage together as a family. We have self-contained accommodation for parents and siblings away from the sick children's bedrooms, so if they choose, families can temporarily hand over to staff the care of their sick child, while having a proper rest themselves." Bear Cottage is staffed around the clock by a skilled care team, including nurses, a play therapist, visiting medical staff, pastoral care workers and other relevant professionals, to care for sick children while their families have a break.

Built by The Children's Hospital at Westmead, Bear Cottage cares for families with children who have progressive, incurable illnesses that result in death before adulthood. These may include neuro-degenerative disorders, muscular dystrophies and other neuro-muscular disorders, some children with cystic fibrosis, mucopolysaccharidosis, other fatal inborn errors of metabolism, incurable cardiac disease, incurable renal disease, some children with cancer, HIV/AIDS and some children born with congenital anomalies.

Hospices for children differ from hospices for adults: in a children's hospice, the illnesses are different; there may be slow but relentless deterioration over years so that periodic respite care for the whole family becomes much needed. The number of people affected by the patient's illness and who require support is usually larger.

With estimates of one-in-10,000 children having a life-limiting illness, there are 800 families in NSW eligible to use Bear Cottage. Families staying at Bear Cottage will not only come from The Children's Hospital at Westmead, but from all over NSW including Sydney Children's Hospital at Randwick and John Hunter Hospital. Families do not have to pay for their stay at Bear Cottage and all costs are covered entirely through donations.

Sarah and her family will be available for media for a short period only on Friday 8th June to ensure they receive the holiday they need.

For all media enquiries, please contact:

Debra Fowler
Public Relations Officer
The Children's Hospital at Westmead
via switchboard on
Ph: (02) 9845 0000