Our daughter, Anouk, was born six years ago with Pompe’s disease, a serious muscle/metabolic illness. It was estimated that she would not live beyond a year. Because it was our last recourse, we enrolled Anouk in a trial of enzyme replacement therapy when she was seven months old. She started receiving weekly enzyme replacement therapy by an infusion at the Sophia Children’s hospital. At that time, Anouk needed 24-hour assisted ventilation via tracheostomy.
Anouk spent the first two years of her life in hospital because our house was not adapted for her. When it became clear that Anouk was not getting worse, we decided to take Anouk home with us. The home ventilation team looked for a suitable home ventilator, which was difficult because Anouk weighed only 10 kilograms. Finally, we went home with the BiPAP® Synchrony (Respironics, Inc.).
From the moment Anouk came home, we used PCB to engage nursing assistance to help us with her care so that now and again we can go out to “recharge our batteries.”
When Anouk was 4 years old, her condition became stable, and we started looking for a suitable school. We found a special school in our neighborhood, but no one there knew how to use the ventilator sufficiently. So we created a team of people who could provide that kind of care. The team (three nurses) stays the whole time with Anouk – monitoring her equipment, suctioning her and helping with her schoolwork. I trained them myself, so that everyone provides care for Anouk in the same way.
Anouk has been attending school for two years. She spends four days a week at school. The taxi comes for her at 8:15 am and brings her home at 3:15 pm. I don’ t go with Anouk to school – she must learn to function without me and I can learn to release her. Of course, I always will be there in the background.
I provide Anouk’s care when she is at home; it is a daily routine that I like to do in our family. For my other daughter, it is pleasant that we are a family and that there are not always other people in our home. Sometimes we have a short holiday together while someone else, paid by money from the PCB, looks after Anouk.
In the past few years, we have found a good balance, with everyone positive about this way of caregiving in the family. I recently started to work in the evening hours, and Anouk’s father is looking after her very well.
The opportunity to apply for the PCB makes it possible to have Anouk with us at home, and we are together, one happy family.
This article appeared originally at the International Ventilator Users Network (IVUN).