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Rainbows family asks for support at Diwali

A Leicester boy with a complex illness, whose eight-year-old brother died in a tragic road accident, will be enjoying Diwali this year thanks to the support he receives from Rainbows. 

Twelve-year-old Neel Naran has several disabilities, including suffering from severe seizures and autism. 

Neel and his family are supported by our hospice but in May 2018, Neel became so poorly, he was taken to Birmingham Children’s Hospital where his parents, Meera and Dilesh, were told their son may not survive. They called for his brother, eight-year-old Dev, to come and say goodbye but in a cruel twist of fate, Dev was tragically killed on a SMART Motorway that evening. Neel survived the night.

Now Meera wants to raise awareness of our hospice and is asking for donations at Diwali. 
“My grief isn’t just about losing a child,” said Meera. “It is about grieving for a very sick child too. It is something you don’t plan or envisage. You love your child unconditionally and just want them to be happy. 

“We have been lucky to have had the support of Rainbows and that has made a world of difference to Neel. Certain activities like swimming and soft play, that he wouldn’t have been able to do anywhere else, he can do at Rainbows. Through Rainbows, his world has opened up to things he didn’t have access to. 

“Our family support worker has been an angel, literally just an angel, there are no other words to describe her. Rainbows is like an extended family that I didn’t know we needed and I feel so blessed.” 

Neel’s illness was picked up as a tiny baby when at just three days old, he suffered 30 percent brain damage and Meera and Dilesh were told Neel would be deaf, unable to speak and blind. 

“He was my first baby and it was terrifying. It was really, really traumatic,” said Meera. 
Dev was born 13 months later and Meera felt there was a clear difference in the abilities of her two sons. “They loved each other so much and were absolutely devoted to each other,” she said. “Their love was completely blind. Dev was such a caring boy and loved Neel unconditionally.” 

When he was three, Neel started to experience status epilepticus – seizure activity that last for a prolonged period of time and a few years later, the drop seizures began. Meera described the terror of seeing her son launch off the floor. 

“He would go up to one metre and hit himself on things,” she said. “I kept thinking any one of these could be fatal. Dilesh and I had to sleep in shifts to make sure that Neel didn’t choke or hurt himself during the night due to his seizures. His autism and ADHD also made him vulnerable and at risk of hurting himself as he had no sense of danger.” 

In August 2017, Neel underwent brain surgery but he had a stroke the next day and lost the ability to do anything. “For the second time, we refused to give up and neither did Dev and we worked together to get Neel to walk again and start talking again. 

“When Neel began suffering uncontrolled seizures, he was taken to Birmingham Children’s Hospital. We were told he wasn’t going to make it so Dev came to see his brother, as he always did. But Dev passed away that evening. Neel pulled through and we went straight to Rainbows the next day. 

“A week later, Neel came home and we told him what had happened to Dev. His grief was heart-breaking to see. And then he stopped walking and talking again and he slowly started to deteriorate due to his grief. For the third time, with Dev in my heart, I began the quest and got Neel walking again over lockdown.” 

In October last year, Neel’s sister, Evangeline, was born. A name that was chosen by Dev. “Hope gets me through. I have to have faith in myself, I am the advocate for my children,” said Meera. "Learning to live with my grief has not been an easy journey but I have Dev in my heart and I have learnt to stay positive and optimistic and continue to raise awareness around grief and support others through motivational speaking.

“We are looking forward to celebrating Diwali this year and are thankful to everyone at Rainbows for their ongoing support.”

To support Rainbows and families like Neel’s, visit rainbows.co.uk/diwali