Haroon Seedat was the very first young person to ever come through the doors of Rainbows in 1994 when he was 19-months-old.
Now 26, Haroon still comes to Rainbows and his parents, Hajra and Mohamed, have been told their son is a “miracle”.
Haroon contracted Meningitis when he was seven-weeks-old which left him brain damaged. He is blind, unable to walk and talk and is fed through a tube. He also suffers from asthma and epilepsy.
“At the start, the outlook was grim and as a young family we were in a state of shock,” said Hajra. “The first two years of his life were spent in and out of hospital – the Leicester Royal Infirmary was my first home.
“It was when he was about 18-months-old and was in hospital for nearly two months that we were told about Rainbows. It had just been built and the staff were being trained. We were offered the chance to take our son there and the nurses and doctors would look after him. We were told that as a family we could also stay with him. So we went not really knowing what to expect.
“The place was in the middle of nowhere, the housing estate which now surrounds it was not built. We went in with the nurse from the Leicester Royal Infirmary and were greeted by some nurses and Dr Jassal the local GP. These strangers welcomed us and provided the reassurance that my son would be safe and looked after. And look after him they did.
“In the early days Rainbows was about providing respite care. When I needed a break they would look after my son so I could spend quality time with my older son and also recharge my batteries. Rainbows still does this and you cannot imagine how vital this service is, it helps keep you sane and keep going.
“But today Rainbows is so much more. 25 years on and we still use Rainbows. It is not like you imagine a hospice to be, it is a place of fun, celebrating life and making the best you can of what you have. There are no sad faces and Rainbows is about looking after the whole family.
“But what makes Rainbows special is the people. When you are faced with the prospect of having to bring up a child who will not do the normal things other children can do, your hopes and dreams of this perfect life you had imagined are lying in tatters around you. That is the point at which the staff at Rainbows pick you up. They provide that care and support and at the right time give you a good kick up the backside so you keep going. They are your best friends and family and they make you realise and appreciate what you have.
“Haroon loves going to Rainbows. We tell him he is going to Rainbows and he has a big smile on his face. He knows where he is.”