Helping others make the most of life

Palliative care for terminally ill children and their families is still in a nascent stage in the country, but several organizations have in recent years been passionately championing this multidisciplinary approach

Having a child who is diagnosed with a terminal illness should not equate to suffering for everyone in the family.

Lyn Gould, the British founder of Butterfly Children's Hospice in Changsha, Hunan province, said that with good symptom control and family support, the child can still go to the seaside, visit Disneyland, or simply be out in the garden to play with the dog or friends.

The point is not to dwell on the imminent demise and be resigned to having sad memories of the child suffering in hospital, but to bring hope back to the family and allow the child to feel joy.

"When the child is gone, the family will still have those memories of their child being happy to help comfort them," said Gould.

When parents struggle to provide sufficient care for a sick child and end up abandoning him or her, Gould picks up the pieces. She has throughout the years found numerous babies who were abandoned. Many of them suffered from de-generative or neurological diseases such as cerebral palsy. Some of them even came with notes expressing their parents' regret and anguish.

Founded in 2010, Butterfly Children's Hospice can accommodate up to 18 children. In contrast to most orphanages in China where a caregiver has to manage 10 to 15 children, each nanny at Butterfly Children's Hospice takes care of no more than three and do not have to perform other duties such as cooking and cleaning of the premises. The home also employs licensed nurses to provide quality medical care for the kids.

This commitment to providing the best possible care to their children has meant that the hospice's largest expenditure is on staff salaries. Gould shared that the home's operational costs amount to around 250,000 yuan ($35,967) every month.

Since its opening, Butterfly Home has taken in 176 children. Half of them have since died while the rest are said to be recovering well from their illnesses. In addition, around 20 children have been adopted over the years, mostly by American or European families. Children who suffer from more serious conditions and require lifelong caring and special education, such as those with complex cerebral palsy, are sent to other institutions.