Not a day goes by without hearing or seeing news or statistics pertaining to Covid-19, new lockdown announcements about Level 3, or people complaining about not being able to buy alcohol or cigarettes.
But, for three-year-old Amalia Adams and her parents, there are so much more to worry about.
Amalia was diagnosed with Dandy-Walker Syndrome (DWS) shortly after her birth in 2017, and had a shunt inserted to drain off excess fluid within her brain. She was also diagnosed with complete agenesis of the corpus callosum (ACC), hydrocephalus, cortical vision impairment (CVI), scoliosis, nystagmus, hypotonia (low muscle tone) and she suffers from infantile spasms (IS).
Not many people have heard about DWS as it receives very little coverage, and affects 1 in 2 500 children. DWS is described as a rare congenital malformation that involves the cerebellum (the part of our brain that controls movement), as well as the fourth ventricle. In about 70 to 90 per cent of patients, the abnormalities are also associated with hydrocephalus, a condition characterised by cerebrospinal fluid accumulating in the brain. Symptoms could include slow motor development.
Amalia has spent at least half of her three years in hospitals, putting her at an even higher risk than any other child. In June last year, a port-a-cath was inserted under her skin to assist with intravenous treatments. At the same time she also received a PEG tube to assist with her feeding. And for the Adams family one of their biggest challenges currently, is to ensure Amalia is healthy and infection-free, so that she does not have to go to a hospital.
Amalia’s medical team has advised her parents that she cannot go anywhere outside of their family home, not even to the park, and they are receiving telephonic consultations as it is also not safe to go to a consulting room.
Having disabilities has not always been easy for Amalia or for her parents. Shaaqira cannot work as she is involved with Amalia’s care 24/ 7, 365 days per year. Taahir, a graphic artist, is also very involved, making it nearly impossible to keep full-time employment. Amalia needs six different therapies on a weekly basis and with the current lockdown and the extremely high risk of infection it is becoming very difficult to maintain the proper care for her.
To help with her chronic medication and other needs, a non-profit organisation has been set up. Her foundation, Aspirations 4 Amalia, hopes to raise more awareness about DWS as well by putting more focus on the plight of disabled children and their parents.
For more information on Amalia and how you can assist, visit her website at www.aspirations4amalia.org, or send an email to firstname.lastname@example.org. Alternatively, call 086 111 5690 or 074 104 7066.