Imtiaz, father of Anya who has MPS III Sanfilippo, shared his family's experience of returning to school this term and the difficult decision and plans they have put in place to help keep Anya safe whilst their youngest daughter attends mainstream school.
Anya is in the end stage of her condition and no longer attends a school setting, the family have a personal education budget and support Anya at home. Anya is extremely susceptible to common illnesses and suffers from severe chest infections and the family are still maintaining a form of shielding with her. Aliza, Anya’s sister has returned to mainstream school despite the family's concern of the risks of COVID-19 and that Aliza could bring this back into the home.
Imtiaz explained the difficult decision they had to make in realising how important it was for Aliza to go back to school whilst protecting her sister as much as possible.
Aliza was extremely excited about returning to school but also terrified of spreading COVID-19 to Anya and the concern about Anya’s strength to battle the illness.
The family have taken extra precautions. On Aliza’s first day back to school she was ready with her face mask, but, as she is in primary school, she was the only one wearing a mask and did not want to be singled out. Fortunately her school have put many safety measures in place by keeping desks two metres apart and having lunch breaks in the classrooms.
At home, Aliza has been given the official title of “hygiene police” and she takes extra care with cleanliness when returning home. This includes a full wash and complete change of clothing as soon as she gets in from school. Aliza came back from her first day at school very happy.
Imtiaz told us that before lockdown there had always been a constant conflict between providing for the family and creating family moments together so they have enjoyed the extra time this year. You can watch some of the family videos that they created to record memories and a timeline for Aliza about her sister.