Kam Brar was just 17 when he passed away in November. Although still newly bereaved, his parents Jass and Hardip want to pay tribute to their courageous son by sharing their story.
Determined, brave, considerate and inspirational are just a few of the words used to describe Kam Brar.
Liverpool FC fan, Kam, passed away at his home last November. A special tribute written by his friends said: “Kam you will always be remembered as our friend. We will miss you and you will never walk alone.”
Kam had muscle-wasting disease Duchenne Muscular Dystrophy. He first starting showing signs of the condition when he was five-years-old.
His mum, Jass, said: “Myself and my husband, Hardip, were told Kam would end up in a wheelchair and that he would have a shorter life, around 25 to 30 years old. I felt like someone had turned my world upside down, it was just shocking news.”
Not wanting to believe it, Jass sought out different opinions with doctors in London and India. “I was clinging on to hope,” she said. “I would try anything to make my boy better. When he was young I would push him to exercise. I thought it would make him stronger, I thought it was going to help him. I tried everything to make a miracle happen, but then he began falling over and we had to get the wheelchair and I knew the doctors were right.
“Kam would get so upset. He didn’t understand, he was just a child, He would fall over and then ask me ‘Why am I falling over?’ and sometimes I just didn’t have any answers.
“But Kam didn’t let his wheelchair define him and he never saw it as a bad thing. He used to give his cousins a ride on it!”
The teenager hated spending time in hospital and was at his happiest when he was at home with his family. He was very close to his extended family and was also extremely popular, having many friends at Ashfield School and Rainbows.
“Kam preferred to stay at home but he did go to Rainbows and once he was there and with his friends, he liked like it. He used to like the activities there,” said Jass. “Once he made some dog biscuits for his friend’s aid dog and he was so excited. He was quite happy and confident, always smiling. At Rainbows he loved the sensory room, we appreciated Rainbows so much. Our daughter, Indy, who is now 21, also stayed at Rainbows. It was good for us to spend time together.”
Three years ago, Kam began picking up chest infections and struggling to eat. After spending time in hospital, he was given a nebuliser and a ventilator. He also underwent surgery for spinal rods.
“We decided then to make his life as happy as we could. We took him to Disneyland Paris and lots of beaches and parks. Kam just loved to have fun, he never took anything seriously.”
Last November, Kam was taken in to hospital as his heart rate was unusually high and his potassium levels were unusually low. The situation was very serious but after numerous medical interventions, his heart rate dropped. “This caused confusion in the doctors,” said Jass. “They said Kam was a unique boy and everything started to get better. Then one day his body just shut down and there were so many people in the room trying to resuscitate him. Kam was on a ventilator and we were told we only had 10 minutes with him. But somehow he got his breath back and carried on. We were told he was a miracle.”
Kam slowly started to improve but then he took a turn for the worse. “Doctors started saying Kam wasn’t responding and everything had changed,” said Jass.
“They said he was unlikely to survive and we had to tell him that. He didn’t cry. As a parent I wanted to save his life but I couldn’t. Kam kept telling everyone he was going to heaven. It broke my heart to hear him say that and not be able to do anything.
“Kam didn’t like being in hospital and we wanted to take him home. Kam just loved being at home, he was king of our house. He was the most relaxed there with all of his things so, for us, it was very important that we took him home. At home, we knew that we all would be able to spend quality time with him.”
Once home, Kam relaxed and showed more signs of the cheeky boy everyone knew him as. He spent time with his family and friends, writing messages on his laptop and making everybody laugh.
“Kam came home on the Friday and on the Monday morning he was struggling to wake up. The doctor came to see him and then Kam took two breaths and died. Right at the end he has a smile on his face. He was so brave and I am so proud of him.”
After he died, Kam came to Rainbows and was cared for in our Bereavement Suite. These special bedrooms and family lounge have equipment which allows us to care for children and young people for several days after they have died.
His family were also allocated a dedicated Family Support Worker, Karen, who supported them in the difficult process of saying goodbye. Karen helped Jass and Hardip to plan Kam’s funeral as well as helping them to look after their son in the special bedroom. She also offered emotional and practical support for all of their needs and will continue to do so for as long as the family need Rainbows.
Hardip added: “He meant the world to us. There was so much laughter in this house and now it feels empty. He was a very happy boy and he was so cheeky. We think about him all of the time. He was my star.”