In January 2022, our precious daughter, Imogen Hope Nottingham turned 2 years old. We celebrated with family and friends but she was a bit under the weather which we put down to a hangover from a Christmas bout of Covid her and her Mom had. Other than that, she was an awesome 2 year old, doing everything you'd expect her to do.

Within a few days, she was admitted to hospital for a week. She had a nasty virus, which they were treating, but more worrying was that we'd begun to notice a loss of balance, hand tremors and her basic motor skills had begun to deteriorate. In hospital she continued to deteriorate to the point of not even being able to sit up, feed herself and her eyes had started to shake uncontrollably. This was terrifying, for her to deal with, and for us to watch but we had no explanation. 

Tests, tests and more tests were inconclusive, and once the virus was treated she began to improve a little and we were discharged with a working assumption of post virus encephalitis and that hopefully it will 'work itself out'. 

Well, it didn't. She deteriorated and for the sake of brevity, I'll skip past all of the ensuing in's and outs of hospital. We know something was wrong and we needed answers. We are so fortunate to have a wonderful private healthcare policy with Equipsme and we sought a second opinion which took the form of a 2 day overnight stay in London at the end of March, with an array of tests which poor Immie endured (as she always had) unbelievably well.

On the 5th April, we had a Zoom consultation with the consultant and our life changed forever. We were told Immie had some form of a rare neurological disorder but as there are around 200 of these, we needed to find out which specific one she had. There was no sugarcoating of the news - we were told in no uncertain terms, the majority of these disorders are life limiting, life changing and will almost certainly impact her for as long as she's alive. We were crushed. 

Again I'll spare the details on here (feel free to ask privately) about the next month. But whilst every hour and every day without knowing what we were dealing with was tortuous, we eventually got some answers. 

On the 6th May 2022, Immie was diagnosed with Opsoclonus Myoclonus Syndrome (OMS) which is a rare neurological autoimmune disorder when the body mistakenly attacks itself rather than the thing that is causing the response. Her immune system has begun to attack her brain for reasons not yet understood fully. The condition affects as few as 1 in 10 million children and as a result diagnosis isn't easy, and also there is limited (but growing) research. 

Her treatment started immediately. We were referred to the Neurology team at the Evelina and soon met with Dr Tom Rossor and from that point onwards life has gradually improved. Dr Rossor and Dr Lim are incredible as are the team around them, and we took/take so much comfort from the expertise and knowledge they have. 

Immie now has high dose steroid for 3 days each month which she will have for 12 months (to May 2023), and in the months of July and December 2022 her and I visited the Snow Fox ward* at the Evelina (*full of absolutely incredible people we can't thank enough) every Wednesday for an infusion of an immunotherapy treatment to essentially deplete her B cells and remove her immune system. 

The hope is that we can get Immie symptom free, then eventually get her off medication, and then the hope is that the immune system has re-wired itself and no longer attacks the brain. Then she will be in remission and we move forward and manage any long term cognitive impacts all this has had on her. I'm certain I've absolutely butchered all clinical detail and information but that's my lay mans version!

Immie is fighting this thing with everything she has. She is so brave and astounds us every day and with every step. We don't know the twists and turns that lay ahead. We know it's not going to be plain sailing, likely ever, and she will always have this thing that resides in her even if she gets to remission. 

But with the care, support and expertise Dr Rossor and the team at the Evelina give us, we know we are not alone and Immie will get the very best life she can have. I don't say this lightly at all - the Evelina have changed our lives. From my family to yours, please give whatever you can to allow them to help even more families like ours. 

Immie has just celebrated her 3rd birthday (at the point of writing this) and we now know she is also the first child in the UK to participate in a global long term study into OMS - so she will participate her whole life in this study to help the experts understand more about this rare disorder. We are so overwhelmingly proud of her. 

Most important message. Even in the first 2 years of being parents we had started to take her health for granted as we sleep-walked through our busy lives. Now, every step, every hug, every 'I love you Daddy', every moment means so much more than it ever could. Give your kids (or loved ones) an extra squeeze, and appreciate every minute with them (even the hard times) - things can change in a heartbeat. 

From me, Allison, Immie and Thea (born 9th May 2022 - 3 days after Immie's diagnosis!) - THANK YOU xxxx

UPDATE - JULY 2023

Immie is now 2 months-ish since her last medication, so we are in the waiting game. She still has a zero b-cell count so we need to wait for those to replenish to know exactly where she is in terms of her response, and next steps. Essentially we are hoping for no relapse, but it could come any time and then we investigate and treat from there, with some pretty grim escalation protocols ahead if she does. 

Keep everything crossed for her, but in the meantime, she is doing great and is loving life, so we are immensely thankful for that. She's just had an amazing 3 weeks with all 5 of her cousins in the US, which did her the world of good. 

More on the wonderful team at the Evelina .....

Every year more than 103,000 children and young people experience the wonderful warmth of Evelina London, which is part of Guy's and St Thomas' NHS Foundation Trust. They see first-hand the care and passion of the Evelina London team who are exploring new approaches and creating ground-breaking care for children and young people. To give you an idea of the impact of your donation:£20 could help put a child's mind at ease with imaginative toys, books and games that explain what happens in hospital.£50 could help the team put together amazing rucksacks full of distraction toys for every ward and department.£100 could give every child the chance to escape into their favourite film, by buying more DVD players with headphones. Thank you so much for your support!