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Immie’s astounding treatment

Thanks to the compassionate care of Evelina London, Immie responded really well to treatment – and Jon’s hitting the road to say thank you. 

When little Immie fell seriously ill, all her parents Jon and Allison could think about was getting her well again. 


An anxious search for answers 

“When Immie was first admitted to hospital, we just thought she had a nasty virus. But her symptoms got increasingly worse – she was unable to walk or even sit up” says Jon. “It was terrifying to watch, and we had no explanation why it was happening.” 

Following months of tests – and extreme worry – Immie was finally diagnosed with a rare neurological condition called Opsoclonus Myoclonus Syndrome (OMS), where the immune system starts to attack the brain. 

OMS affects one in 10 million people and can cause life-long changes in the brain. 


Surrounded by caring experts

Immie was then transferred to Evelina London under the care of paediatric neurologist Dr Tom Rossor. Jon says, “From that point on, life has gradually improved. Tom is incredibly compassionate, but so knowledgeable too. We felt so reassured having the expert team at Evelina London on our side.”  

To help manage Immie’s condition, she was put on a year long course of steroids and two months of weekly immunotherapy infusions, delivered through a small tube called a cannula.  

Jon says, “Fitting a wriggly two year-old with a cannula is not easy – I think we went through 10 one day – but the team were so caring and made such a fuss of Immie that she would sit still for six hours, every week.”

“I was so astounded at everyone who cared for Immie, and just knew I had to do something big in return.” 

Jon, Immie's dad

Saying thank you through fundraising  

Jon is so grateful for Immie’s ongoing care that he wanted to give something back to the team, so he signed up for the Royal Parks and then the London Landmarks Half Marathon. To date, Jon and his team of fellow runners have raised more than £50,000. 

Today, Immie’s symptoms are under control, but Jon and Allison know her condition could relapse at any time. He says, “With the care, support and expertise of the team at Evelina London, we know we’re not alone and Immie will have the very best life she can.”