Family Care Hub Use Case

Find out how Family Care Hub has helped a split family co-parent their daughter's rare disease

"Family Care Hub has finally given me real-time visibility into my daughter's health, overcoming the barriers of a split family, distance, and the pandemic lockdowns." ⭐⭐⭐⭐⭐

 

"My youngest daughter suffers from a rare congenital bone marrow anemia disease known as Diamond Blackfan Anaemia (DBA). She was very sick for the first 3 years of her life and required many outpatient tests, long term hospital stays involving more testing, specialised diets, and constant monitoring. At the time DBA was suspected but we did not have a confirmed diagnosis. Thankfully her symptoms started to disappear and by the time she entered pre-school, although she was underweight and small for her age, her health was regarded as normal.

I noticed my daughter struggling during her end-of-year dance concert in 2016. She was very pale and had been feeling nauseous all day. I took her to get a blood test the next day and had to take her to be admitted into the Children’s Hospital at Westmead the following day. To cut a long story short, her disease had returned and the DBA diagnosis was finally confirmed via genetic testing.

The only treatment for DBA is a regular blood transfusion and my daughter has needed to spend a day in hospital every month since diagnosis. Long term blood transfusions create iron overload which can lead to permanent organ damage. Removing the iron requires chelation medication which in itself can create serious health problems.

Having separated from my wife in 2014, managing my daughter's care has been done exclusively via SMS and email. This has led to many issues, arguments and confusion. My primary means for monitoring my daughter’s health was during the times when I would take her for her blood transfusion as this gave me an opportunity to talk directly with her haematologist.

In 2020 my daughter moved to Queensland with her mother. The distance and covid lockdowns generated further communication problems compounded by the time taken to transfer her case from Westmead to the Queensland Children’s Hospital.

Family Care Hub has finally given me real-time visibility into my daughter's health, overcoming the barriers of a split family, distance, and the pandemic lockdowns.

Thanks to the application I have learned that my daughter has been put on thyroid medication. I now know the dosage for her chelation medication and have been able to have meaningful conversations about her future.

"Thanks to the application I have learned that my daughter has been put on thyroid medication. I now know the dosage for her chelation medication and have been able to have meaningful conversations about her future."


Next year she will move out of her mother's home to start University and will use the application to take responsibility for the management of her disease. Family Care Hub will empower my daughter and improve the quality of information provided to her medical specialists. Most importantly, the application will support her independence while enabling her mother, her two sisters and me to provide support from three different locations. "

"Most importantly, the application will support her independence while enabling her mother, her two sisters and me to provide support from three different locations."

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