Special needs takes a special kind of love
CARING for three children — two with special needs — is tough at the best of times. But it takes a very special mum to steer her family through the last year when help has disappeared, and still emerge smiling.
Rhiannon Burden’s two-yearold daughter, Ivy, has Down’s syndrome while her stepson, Jagger, 13, suffers from a severe muscle-wasting condition called Duchenne muscular dystrophy and is confined to a wheelchair.
Tragically, in January, the family also learned that Jagger’s life is now severely limited.
‘It’s really ramped up the pressure to ensure every day counts,’ says Rhiannon, 37, a former office manager who lives in Romsey, Hants, with her fiancé James Curtis, 45, a businessman. They also have a daughter, Evie, aged nine.
Somehow, on top of everything else, Rhiannon is also studying remotely for a Masters degree in psychology of science.
The couple’s flat has no special adaptations, which makes life doubly hard as Jagger needs help with everything from dressing to bathing. Meanwhile, Ivy cannot be left unwatched.
‘I’m not sure I’ve managed to go to the loo alone this entire year,’ Rhiannon says. ‘My days start at 4.30am with Ivy shaking me awake to play with her.
Rhiannon and James decided to homeschool Jagger and Evie during lockdowns. Covid restrictions meant swimming and physio sessions were cancelled.
Undeterred, Rhiannon set up a gym and a boxing ring.
‘We turned the garden into an obstacle course and had regular sports days,’ recalls Rhiannon.
‘Few children with Jagger’s condition live into their 20s. In January, the family got the devastating news that his heart is starting to fail.
‘But when he asked me how long he had left, I told him none of us know how long we have, and promised every day would be special.’
‘This year has been exhausting but it has been a privilege to spend more time with the kids.’