Fighting for our children
Joanna is mum to 7-year-old Sebby who has an undiagnosed disability. Her blog covers the challenges they face regarding access, schooling and friendships – but also the positives for the family.
As our daughter Millie turns 18, we’ve been reflecting on her incredible journey and the love and care that has nurtured her to this great milestone.
Millie’s not rolling
Millie was born with a still-undiagnosed seizure disorder, although it didn’t manifest itself until we noticed development delay at 4-5 months – and perhaps as a result of Millie being the youngest of a busy household with two older brothers and a sister!
She was admitted to Great Ormond Street Hospital for tests and to stabilise her condition. We wear the scars from those early, terrifying days – the nasogastric feeding tube, the strange subterranean parents’ bathroom, injections, tests and procedures, the feeling of ‘normal’ life being torn apart… I found the little postcards that I wrote for the other children left at home – reassuring, comforting, telling them all would be well, when our world was falling apart.
We started on a 10-year A-Z tour of epilepsy treatments – keto diet, random vitamin trials and much in-between – finally embarking on a trial of the Vagus Nerve Stimulator (VNS), an implanted device that has proved life-enhancing and life-changing for Millie in terms of seizure control.
The ‘new normal’
For much of her life up to the age of 11, Millie was in and out of A&E – generally on a Friday evening or middle of the night – with the late-night dash by ambulance to visit our friendly local ‘crash’ team.
I needed to work full time to support the family, so Millie was looked after by an army of daily help – nanny/au pair and children in the morning, school in the day, carers in the mid-afternoon, swapping for me back from work at 6.30pm each evening.
It was a whirlwind for us all and so much more disruptive for Millie, who needs routine, calm, known voices. For some of those years, we felt Millie existed, rather than really lived.
Finding Millie’s new home from home
I vividly remember the day that Millie’s primary teacher, Stella, and I first visited Tadworth. The school buildings were not the smartest we had seen (they’ve had an upgrade), but the grounds and the residential houses were beautiful. Above all, it was the staff in the school and houses that impressed us the most.
We’d looked at lots of other schools with residential houses, but this was the one that was perfect for Millie. With young people in wheelchairs just like her, Millie loves school (now college) and has built strong friendships with other young people that have been on this journey with her over the last seven years.
Most of all, The Children’s Trust has given Millie stability, routine, known voices, staff who follow her from school to house to continue the learning journey – and a brilliant programme of chest management, performed by highly trained staff each day, that has kept Millie away from the chest infections and pneumonia that presented such a risk to life. And not forgetting special yoga – Millie’s favourite part of the school week!
The brilliant therapy team support the young people in school and their houses – supported by excellent facilities for hydrotherapy, music, rebound and resonance therapies. Millie’s medical team meets most of her complex medical needs, and lots of consultants visit young people at the school – this limits the need for disruptive (and currently risky) journeys to their tertiary hospitals for outpatient appointments.
Life today
Family life for our other children has largely revolved around Millie – when she’s well, the sun’s out; when she’s poorly, the skies are a bit greyer for us all.
Happily, these days, there are many more sunny days than grey… and The Children’s Trust has played a very big part in that story.
