It was Christmas 2016 that Aadi, from Leicester, and his family found themselves on a devastating journey they never expected.
Aadi was 11 months old when parents Panna and Mark noticed he had started to crawl less and winced when he pulled himself up to standing.
He was referred to hospital for testing and three months later, Aadi was diagnosed with Type Two Spinal Muscular Atrophy (SMA) – a neuro-muscular condition that affects the nerves in an area of the spinal cord. These nerve cells become damaged, breaking the link between the brain and the muscles. As a result, the muscles can’t be used and become wasted and the condition can shorten life expectancy.
“It was devastating,” said Panna who describes her three-year-old son as a very bright, funny and loving boy. “There had been talk of SMA, and we had read up on it, and it was very daunting. When we actually got the diagnosis, it was a horrid day but we just had to pick ourselves up.”
Aadi also has a weak chest which puts him at risk of infections and has been admitted to hospital many times with respiratory problems. Aadi has a range of equipment to help his chest and he also has overnight ventilation to help his lungs work better.
Knowing they needed support to provide the best care for Aadi, the family, turned to us.
“Our first stay at Rainbows was fantastic,” said Mark. “Aadi just loved it and we could see how happy he was there. When you are used to caring for your child all of the time, we found it hard to let go, but seeing the staff at Rainbows gave us such confidence. And Aadi was so happy and so comfortable around staff.”
Not only is our hospice a fantastic environment for Aadi, Panna and Mark also benefit from our support. “Instead of having to do the medical things, we get to be parents to Aadi and do the fun things,” said Panna. “We also get to be Panna and Mark and spend time together knowing he is safe. Even our food is cooked for us, and I did not know the food would be so amazing.
“It is such a nice environment for Aadi to be in and to mix with other children who have disabilities like himself. It is also lovely to meet other families, which is important for us as parents. It is a good support network.
“We don’t know what our future holds but we have to remain positive. There are times where you have down moments but you pick yourself up again and get back on with life. We have to let Aadi see that he isn’t restricted. He can travel the world, he can play sports, he can do anything.”
It is such a nice environment for Aadi to be in and to mix with other children who have disabilities like himself. It is also lovely to meet other families, which is important for us as parents. It is a good support network.