Jothi was born by emergency c-section at 32 weeks. Initially suffering from oxygen starvation, Jothi spent his first 24 hours on a ventilator and the first 93 days of his life in the neonatal intensive care unit. Suffering from a bleed on the brain and Periventricular Leukomalacia (PVL) brain damage, Jothi developed cerebral palsy and dystonia – a neurological movement disorder.
Affected by infantile spasms and Cortical Visual Impairment (CVI), Jothi also underwent a gastrostomy for his feeding issues. Jothi’s parents were told that he would have a poor quality of life.
Jothi has been attending the centre for three years now, and whilst he will always have significant physical and learning disabilities, his personal growth has been remarkable.
When he first started attending therapy sessions at the charity, Jothi struggled with the car journey, so he attended every other week. Home-play therapy plugged the gap, introducing him to sensory play, whilst he got used to the car journey. His cognitive understanding started to develop, learning how to anticipate actions and activities. As his strength developed with age, Jothi developed a love of bouncing on the trampoline with assistance, splashing water with his hand and learning about cause and effect with switch adapted toys.
Learning how to support Jothi’s physical progress by taking part in the weekly physiotherapy sessions has meant that his parents were able to see firsthand what a difference the therapy has made to him. He has learnt to turn a page in a book, push cars down a track, roll a ball to a friend, make choices and the most momentous thing of all is when he is trying to take some steps with the support of a walker. He is desperate to be on the move; he just needs a lot of support to do it and the opportunity to do it in his own way.
Despite his initial bleak outlook, his progress – no matter how small – means everything to his parents. Jothi is now four years old and still comes weekly for his physiotherapy. He is filled with energy and is known for his contagious laugh and smile.
“We felt totally lost and isolated when we left hospital with a nearly one year old with such high support needs. Now, we are learning that with the right techniques or equipment, it is possible to make it happen for him in his own way. One of the main reasons he has progressed so well is down to this additional support and therapeutic input.” – Jothi’s Mum, Kate
