Amari was just three years 9 months old when he was diagnosed with anti-NMDA receptor encephalitis, a rare and severe autoimmune neurological disorder. He was put into an induced coma for treatment and given various medications to help with seizures and infections. However a severe allergic reaction triggered failure of his liver and kidneys, leading to two weeks of dialysis before being transferred to Great Ormond Street Hospital (GOSH) for specialist treatment.
Amari spent two years as an in-patient at GOSH, often spending long periods of time in isolation due to reduce the risk of infection. It was during this time that Amari and his Mum Sebrina met the Spread a Smile team of entertainers.
Sebrina said, “Amari and I would be stuck in his room with not much to do and then one of Spread a Smile’s entertainers would come to the window to see if we’d like some singing or magic. I remember Sar with her guitar and the fairies, and it was wonderful to have the distraction. It was a really tough time as my husband was abroad and Covid had hit, so we were stuck. Amari loves music, instruments and dancing and it was such a lovely thing to see him smiling and laughing. We would look out for the team as often as possible after that and look forward to their visits so much.
Amari in hospital with Fairy Betty
“Due to his condition Amari stopped walking and talking and music became even more important to him. When Spread a Smile were around, his face would light up and it made him so happy. Even if they hadn’t reached his window yet, he would hear them on the ward and would get so excited. Seeing him with something fun to do really made me smile too. In the sad, tough times, these moments helped both Amari and I so much.
“Eventually the entertainers were allowed into Amari’s room and that was just amazing. Amari loved Captain Calamity – the bubbles and the fun – and he became Amari’s top magician. He loved him so much. In the lead up to Amari’s birthday and his bone marrow transplant not long afterwards, Spread a Smile arranged for a special birthday photoshoot for Amari, with entertainers and fun. It is a moment we will cherish forever.
“We went to the Spread a Smile Summer Party for the first time in July 2023 whilst Amari was still an inpatient at GOSH. It was amazing to leave the hospital for a bit and go down to the party to meet all the entertainers and enjoy all the activities. It was brilliant that it was so close to the hospital and both Amari and I had the best time. Amari had built a lovely connection with Kiri, one of the Spread as Smile Visit Managers and Daniel, the magician, through some online magic sessions and he got to meet them in person at the party. It was like
meeting a celebrity for him and he was over the moon. It was a very special day which brought so much happiness and fun. He loves them both so much!
“Spread a Smile is a wonderful charity that brings so much joy to your day. They bring laughter, warmth and a sense of normality and fun which helps distracts your child from what they are going through. Amari looks forward to seeing Spread a Smile so much and they make everything just that little bit better.
“As a parent it’s so tough when your child is really unwell. You look for the happy moments and nice memories to hold on to. And Spread a Smile definitely helps with that. They give you the space to remove yourself from what you’re going through and just enjoy the little things and those beautiful moments that they share with your child. It really is a wonderful thing, and we are so grateful for all that they do.”