Sophie and Hailey

April 1, 2022
Personal Stories
twin girls who both have chronic granulomatous disease pictured with their mother.

Sophie and Hailey are identical twins and the best of friends. Both diagnosed with an inherited immune deficiency at three years of age, the girls have faced significant health challenges throughout their nine years of life.

The biggest challenge of all has been their recent separation from each other whilst each undergoing a bone marrow transplant in order to cure their diagnosed chronic granulomatous disorder and improve their quality of life.

Their parents, Kylie and Andrew, weighed up the options when deciding how to approach this life-saving treatment for their girls. They decided to have both transplants done at the same time to minimise the risk of one child bringing home an infection from school, and to support the mental health of the girls knowing how difficult it would be for one sister to see the other going through treatment and not being able to do the things that she could do.

During hospitalisation Kylie and Andrew were able to see each other and visit each of the girls in their separate rooms within the hospital. However the girls were unable to see one another until they had fully recovered from the transplant and their neutrophils were high enough. This proved a tough time for the normally inseparable twins. Kylie says, “For kids that have always been together this was hard and at times heart breaking. We tried to video call each other every day so the girls could see each other but it wasn’t as good as them being in the same room together.”

Separation from the family’s wider support network also proved mentally challenging as the difficult decision was made to relocate from the family’s regional home town in Queensland to be closer to the Children’s Hospital in Brisbane. The girls enrolled in distance education enabling them to maintain their schooling but missed the social interaction with their friends.

Kylie says, “They have no friends here. All they have is each other. Everyday they miss their friends and wish they could see them.”

In addition to the challenges faced while being isolated and in hospital, Kylie and Andrew also had financial pressures to contend with. Taking trips to the hospital every week, and with both parents unable to work, the cost of parking, medication and nutritional supplements added up very quickly. Arrow helped alleviate some of this pressure by providing the family with financial assistance through our patient support program.

IGA grocery cards and petrol cards were donated to Sophie and Hailey’s family by Arrow to help cover the cost of essential household items and ensure the family was able to put healthy home-made meals on the table.

Kylie describes the assistance as life saving. “Thank you; your generosity is not helping my family but many other families. Without the sponsorship of IGA, Arrow wouldn’t be able to help families as much as they an now,” said Kylie.

We wish Sophie and Hailey a speedy recovery and a cherished reunion back home.

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You can find an update on Sophie & Hailey on our blog here.