Angelo Lakay and his mother Cynthia share a light moment during her visit to St Joseph’s Home. Cynthia spent two years of her childhood at the home. Picture: SUPPLIED

Angelo Lakay sits steadily in his wheelchair with his eyes fixed on the teacher as she points on the board.
He is one of 10 children in his class at St Joseph’s School in Montana, just outside Cape Town.

During the first break, the 5-year-old quickly grabs his neatly packed lunch bag, puts it on his lap and starts wheeling himself gently out of the class. Though he is wheel chair-bound, following a diagnosis of transverse myelitis, a neurological disorder that causes inflammation of the spinal cord that damages nerve cells, Angelo can easily move himself around.

Though he has lost bladder function and has weakened muscle function and sensory problems, he can now get himself out of bed, put in his catheter, lift himself out of his wheelchair, sit on his own and dress himself.

Though these activities may sound simple to another person, staff at St Joseph’s Home for Chronically Ill Children - where Angelo has spent the past three months at the new rehabilitative Sunflower Ward - vouch that his progress is a far cry from what he could do when he was admitted in March from Red Cross Children’s Hospital.

“Though Angelo was no longer in the acute stage of his illness, he was not strong enough to be home, but not sick enough to be in a tertiary hospital where beds are in high demand,” said Alrika Hefers, resource development manager at the home.

The 25-bed Sunflower Ward is one of five at the children’s home, the only facility in SA that provides paediatric intermediate or transitional care for chronically ill children from disadvantaged families through its holistic health and wellness programme.

Patients are referred from state hospitals to continue with post-acute, restorative, palliative and rehabilitative care.

Angelo’s mother, Cynthia Lakay, spent two years of her childhood at St Joseph’s Home after she suffered spinal tuberculosis at the age of 7 that left her paralysed.

She said one of the things she had feared the most was the possibility of seeing her only child in a wheelchair.

“For some strange reason I always had this fear of my child not being able to walk. When he had an infection early this year that resulted in him being admitted to hospital I initially panicked, but after I was told that he was going to be referred to St Joseph for rehab I felt relieved a bit... having experienced their loving care as a child as well,” said Lakay.

Hefers said the facility’s multi-disciplinary interventions such as 24-hour nursing care, rehabilitation (physio, occupational and speech therapy) social work and psychological support, parental empowerment, specialised nutrition, follow-up visits and volunteer placement programmes were what helped children such as Angelo thrive.

She said the home offered the children a second chance at childhood.

Hefers said the need for a dedicated community-based rehab ward had been identified by local hospitals, which are overburdened by trauma, neurological and orthopaedic conditions that need nursing care and complex paediatric rehabilitation.

Today the rehab ward receives more than 70 patients each year, mostly trauma patients (35%), followed by neurological and orthopaedic conditions.

“We are treating more and more children requiring rehabilitation and fewer children with diabetes and cancer than before,” said Hefers.

Faiza Achmat, therapy manager at St Joseph’s, said rehabilitation not only helped children such as Angelo to be independent, but also to live fulfilled lives.