Rainbows is like an extended family I did not know we needed
DISABLED BOY HELPED, INCLUDING AFTER DEATH OF HIS BROTHER IN A ROAD ACCIDENT TWO YEARS AGO
A family say they have been sent an angel to help look after their severely disabled son.
The Naran family said they feel the member of staff at Rainbows hospice in Loughborough who cares for 12-year-old Neel is a blessing. Neel suffers from a complex illness and has several disabilities, including suffering from severe seizures and autism.
His parents, Meera and Dilesh, from Leicester, said: “Our family support worker has been an angel, 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.” The family suffered a tragedy two years ago, when Neel’s eight-year-old brother Dev, a pupil in Year 3 at Stoneygate School, in Great Glen, died in a road accident on his way to see his disabled sibling, who was not expected to live through the night.
In May 2018, Neel became so poorly he was taken to Birmingham Children’s Hospital, where his parents were told their son might not survive.
The brothers’ grandfather set off for the hospital with Dev but was involved in a crash on the motorway.
Dev died instantly on a hard shoulder being used as a smart motorway lane on the M6 after his grandfather’s Toyota Yaris was struck by a lorry travelling at 56mph, an inquest heard.
Now Meera wants to raise awareness of the hospice and is asking for donations to it at Diwali.
“My grief isn’t just about losing a child, it is about grieving for a very sick child, too,” she said.
“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.”
Neel’s illness was picked up when, at just three days old, he suffered 30 per cent 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. “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
Their love was completely blind. Dev was such a caring boy and loved Neel unconditionally
Meera
that lasts for a prolonged period of time.
A few years later, 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 had 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,” Meera said.
“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 heartbreaking to see.
“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. The name had been 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: