When Isabel developed an unexplained prolonged fever and an enlarged spleen, her parents, Agnes and James, were extremely worried. Their oldest son had passed away at the age of eight after experiencing the same symptoms. 

Upon the doctors’ recommendation, the Tan family underwent a series of genetic tests as they suspected that what Isabel had was Hemophagocytic Lymphohistiocytosis (HLH), a rare type of illness which is fatal if not treated. To their horror, the tests confirmed that Isabel had familial-HLH due to defective genes – one from each of her parents who are carriers of this gene. It was also the cause of her late brother’s passing. 

“We were devastated,” shares Agnes. “Everything was so overwhelming!” 

With a bone marrow transplant being the only cure, James stepped in as a donor, while Isabel underwent some treatments including chemotherapy in preparation of the transplant. Shortly after, her beloved waist-length hair began to fall out in clumps. To help her cope, CCF referred Isabel for play therapy sessions. Through role play with a doll, CCF play therapist, Joanne, helped Isabel come to terms with her hair loss and she eventually allowed a nurse to shave off her remaining hair. 

During the course of her treatment, Isabel had to go through a series of blood tests and managed to endure them without crying. “Even the nurses were surprised by how brave she was!” says Agnes proudly. 

Thankfully, the bone marrow transplant went smoothly and she was discharged after a month. While she was happy to be home, life for her changed completely. The usually active girl had to stay in a sterile room 24/7 and be kept away from her older brother, Joel. The separation was hard for the pair who were used to playing together.

Luckily, CCF was there for the family. From pre to post-treatment, CCF social workers, Esther, Sarah and Gabby, journeyed with Isabel and her parents, and surrounded Joel with special support for siblings of children with cancer. “We are so grateful for CCF. They showered Isabel with many gifts, supported Joel throughout Isabel’s treatment, and also regularly checked in on us to make sure we were okay,” says Agnes. 

Since May 2020, Isabel has been attending CCF’s Place for Academic Learning and Support (PALS) classes, which are held virtually over ZOOM. “It’s fun! I like the cooking and arts and crafts lessons, and Teacher Sophie,” exclaims Isabel, now six. Well on the road to recovery, the bubbly Shopkins fan is full of hope for the future. “I want to be a ballerina!” she shares excitedly. “I want to dance, dance, dance!” Reflecting on the last two years, Agnes has this advice for fellow caregivers: “Keep the faith. Pray and don’t give up because miracles will happen.”

Read more inspiring stories of our CCF stakeholders at https://www.ccf.org.sg/humansofccf/index.html.