Disadvantaged children who have Cerebral Palsy are in desperate need of specially fitted chairs. These are essential in order to prevent damaging stiffening of their muscles, and enable them to function in an upright position.
Assisting these children are Boikanyo the Dion Herson Foundation’s Marilyn Bassin, who has been assisting Cerebral Palsy children from informal settlements, and Ruth from the Paige Project, which fundraises and collects used wheelchairs and specialised chairs. We chatted to Marilyn about helping these very vulnerable children to lead a dignified life.
Tell us about Boikanyo and the Paige Project’s work with cerebral palsy patients?
“The Paige project was named after Paige Barson, born with Cerebral Palsy in 2006. In August 2007, David, Paige’s uncle, arranged an event to raise funds to buy an orthopedic chair. Based on the success of the event and the progress of Paige, it was decided to create a permanent project through which funds could be raised to benefit other children with similar conditions but more importantly to educate caregivers and equip them with the necessary tools to effectively look after these children.
Boikanyo the Dion Herson Foundation was established in 2011 while I was volunteering at a huge hospital in Soweto. I had just completed a course enabling me to work with cerebral palsy (CP) children,and volunteered at the CP Clinic, fitting children into wheelchairs. The waiting list was two years long for a chair, and I cleared it within a matter of months. I left the hospital in early 2012, and began working in a community about 15km away.
Over the years as I have come across children in need of assistive devices, I would contact Ruth for assistance with regard to prescribing and obtaining appropriate devices and therapeutic equipment.
Often children and their families are left isolated and due to incorrect or simply no assistive device, their children develop secondary complications which result in further physical complications. So home visits are scheduled and together assessments are done. Discussions are had and decisions made with the family as to what the most appropriate device would be taking the entire family circumstance into consideration.
What sort of specialised care do Cerebral Palsy children need?
These children have needs that are very much the same as every other child, they are just unable to do many things on their own. The assistance they require depends on which muscles are affected. The children we are helping are mostly permanently in nappies. Most need a permanent caregiver. Their food needs to be in a paste as they cannot swallow chunks. Also they cannot eat if their head is tilted, or if they are lying down. Profoundly affected children need assistance with turning over during the night, and most cannot communicate very easily at all.
An example of changing the lives of CP children was in 2017, when I was doing an Easter Egg handout in a squatter camp and a man ran out with a child in his arms, his little body distorted and twisted. I went into their shack and found his brother – in an even worse condition than him. I accessed standing equipment and wheelchairs for them. I introduced their father to a lawyer who started investigating how their mother was left in labour for three days, with no Caesarean Section. This was with a view to sue the hospital where they were born. (I even rescued their dog who was tied up everyday and got him adopted).
So we remain committed to assisting families left unsupported and without the appropriate assistive devices to better support their children. We are honoured to be upcycling these chairs with the Paige Project, and find working together increases the impact both organisations have on communities.”
See also: Every Child Is Special
Pay It Forward
Boikanyo and the Paige Project requirements:
1. Monetary donations to buy foam, material, zips and thread, (only certain fabrics can be used).
2. Sewing groups to sew the cushion covers.
3. Volunteers who will strip and sterilise the chairs.
4. Metal footplates and plastic tray tables.
5. Transport to take chairs from health facilities to a storage depot in Germiston.
Boikanyo Foundation Phone: 083 617 7520
Donations: Standard Bank, Branch Code: 051001, Account No: 331 784 408, SWIFT Address: SBZAZAJJ