The COVID-19 pandemic has affected children’s education, with many classrooms moved online and teaching carried out remotely. While these changes have impacted young people and their families worldwide, the pandemic’s impact may be more significant among those with neurodegenerative diseases like Sanfilippo.
Sanfilippo is one in a group of diseases called mucopolysaccharidoses (MPS). There are seven forms of MPS, and four of these can involve neurodegenerative symptoms: Hurler Syndrome (MPS IH), Hunter Syndrome (MPS II), Sanfilippo Syndrome (MPS III), and Sly Syndrome (MPS VII).
Individuals with MPS and their families depend upon various educators and therapists in their day-to-day lives; these skilled professionals can include speech-language therapists, occupational therapists, physical therapists, rehabilitative therapists and music therapists. Different forms of therapy help support people with MPS, not only with their neurocognitive functioning but in maximising their overall quality of life.
A research article written by scientists, clinicians, rare disease advocates, and parents of children with MPS has discussed some of the impacts of COVID-19-related distance learning on children who have neurodegenerative forms of MPS. In doing so, it aims to provide a resource that caregivers, educators and clinical teams can use to support children with these diseases in times of unprecedented distance learning and care.
The article notes that, throughout the pandemic, schools and therapists may have faced a lack of clear guidance in terms of support for those with special needs. Educators or therapists may not have had experience dealing with distance learning or caring for children with a neurodegenerative disease like Sanfilippo.
In children with a progressive neurodegenerative disease, consistent professional therapy, education and care are essential to uphold neurocognitive, motor, and communication skills and slow down their loss. For children with these diseases, disruptions to learning opportunities, rehabilitation and therapies can lead to loss of hard won functional abilities. They can have even greater difficulty in regaining skills, or experience a complete loss of skills.
As can be expected, the impacts of COVID-19 have had an enormous impact on the families and caregivers of those with neurodegenerative disease. Family members and caregivers may not have the required skills, time, financial and other resources to replicate the education and care for their children with high special needs at home. While issues like these have been reported well before COVID-19 emerged, they have been compounded by the pandemic.
The article provides advocacy suggestions to support the educational, physical and behavioural needs of children with neurodegenerative forms of MPS. These include:
- Consulting with an experienced specialist clinician with an understanding of MPS. This can help to monitor a child’s progress and ensure they receive the most beneficial and appropriate services.
- Collaborating with local schools to ensure students with disabilities have equal access to services.
- Ensuring any education and care provided is suited to the unique needs and interests of each child.
- Considering the needs of children with neurodegenerative MPS when they return to school post-pandemic; for example, maximising social and emotional wellbeing over academic goals.
- Providing families and caregivers information and support, both practical and psychological, to help in managing the challenges of distance learning for special needs children.
As the pandemic continues to impact the lives of those with rare diseases, the ongoing implications of learning and care changes due to COVID-19 will need to be assessed. Advocating for improvements like those suggested in the article can help to create change that will support the necessary education and therapy required by patients who depend upon these essential services.
Cure Sanfilippo Foundation, the USA’s National MPS Society, and Project Alive (an MPS II research and advocacy foundation) were the driving force behind this important collaboration between the clinical, research and patient community.