Mind Over Matter - Rehab for Molly's Brain

Welcome to our fund-raiser. We’re Tim and Ana – parents to a very special girl called Molly, who has just turned 10.

Back in 2017 our then happy and thriving 3-year-old suffered an acute onset of brain inflammation due to a form of autoimmune encephalitis. Delays in both her diagnosis and medical intervention have left her with a severe Acquired Brain Injury.

After a short period of improvement in 2018 when she began to rediscover her friendships, enjoy life and even briefly attend school she suffered a serious relapse. She has never recovered from this and has continued to decline.

She also has a large cyst occupying the brain’s whole left frontal lobe space. The impact of this remains unknown and surgery – which is now being considered – holds significant risk.

She has been unable to access education and socialise properly with peers for many years. Normal family life and activities are impossible due to the severity of her difficulties and her team of therapists and clinicians are struggling to make any progress.

With the approach of adolescence and a very small window of time left to offer any hope of rehabilitation, the next year is a critical one for her.

Every single day that goes by we are fighting for Molly’s future, whether that be embroiled in legal battles with the local authority over education and therapy, attending meetings and appointments or dealing with endless emails and admin – all amidst the hands on day-to-day care of our daughter and management of her package.

Ana has been unable to return to work since being forced to relinquish her career 6 years ago. She cares for Molly alone while Tim works extremely long hours away from the family, and life together as we once dreamed is impossible. Our journey has left us extremely isolated from the community we once had and has stripped us of everything we once held dear.

We have borrowed large sums of money to get to this point. This has included taking out a second mortgage over 2 years ago to pay for outgoing expenses to date which have involved medical, care and therapy costs amounting to £55,200. Despite significant help through a social justice fund, advocacy and legal costs have been in excess of £12,000.

Our total expenditure on our daughter’s additional needs to date is in excess of £67,000.

Costs of Molly’s care are far exceeding our income and we would be enormously grateful for any help to offer her hope of a positive future. Making a donation towards the cost of her ongoing medical, therapy and educational needs - or simply sharing this page - will be a step towards improving Molly’s life. This includes specialist support from a neuropsychologist and legal fees to secure adequate educational provision.

The next year of medical treatment, legal fees and neuropsychology assessment and support amounts to £33,000 – the target for our fundraiser. Further down you’ll find a more detailed breakdown of exactly what these costs entail.

We appreciate that the money we hope to raise is perhaps unrealistic – but it will cover just a small part of the ongoing costs in our continued battle to help Molly.

If you have the time please read further below about our journey, why we are in desperate need of your support and how you might be able to help.

Life before onset

Born on Guy Fawkes Day, our daughter was our unstoppable little firework whose dramatic entrance to the world kept us on our toes and took us to a degree of exhaustion we did not know existed.

She struggled with inconsolable pain throughout each night but as the difficulties of her first year eventually faded away we relished time with her and spent it out of the house, enjoying toddler groups or family activities – soaking up her energy and lively spirit. Her determination, independence and capable nature amazed us and her ability to engage, converse and socialise was years ahead of her developmental age.

She discarded her buggy at age two – preferring to walk mile upon mile, until her third birthday brought her a scooter which she would whizz along on for hours. There was never a moment when she would admit defeat and complain of being tired – even long past bedtime when we had already caved. Despite the exhaustion, we were so excited about what lay in store for our family’s future.

Terrifying change

It was Molly’s fourth year that changed the course of her life – and ours – forever.

At first it was meltdowns over irrational things, insistence that something was placed a certain way, extreme distress over getting dressed, a regression back into nappies, a dislike of savoury foods she once enjoyed – exclaiming they were “too sweet” – and the occasional sentence of gibberish which was unusual given her previously eloquent speech.

That Autumn Ana was forced to leave her 14-year career in the NHS overnight as we watched Molly deteriorate into a psychotic state.

She was pale and her eyes sunken with dark circles. She began to refuse altogether the drink and foods she once enjoyed and what was once clear, in context speech became gibberish. Sensory struggles became overwhelming, hyperactivity hit the roof, she stopped playing, was governed by obsessions and compulsions and suffered extreme, angry and violent meltdowns and panic attacks, triggered by seemingly ‘nothing’.

Separation anxiety consumed her. She could no longer manage nursery or the things that she once enjoyed. Simply moving to an adjacent room in the house would result in hysteria. We rarely got further than our street corner before a panic attack ensued and she had to be carried home again.

She experienced auditory and visual hallucinations. Words continually distressed and tormented her and we spent the months leading up to Christmas whispering and sat in darkness as our speech became “too noisy” and she fought to keep curtains closed each day – the light being “too bright”. She became deeply distraught by these and other trivial and irrational things.

“I’m poorly mummy” she would say, touching her head. “Your eyes look scary, don’t look at me mummy” she would plead in distress.

The previously happy child, who would once run up to greet Tim on his return from work each day would roll on the floor wrapped in blankets and curl up on the sofa shouting at him “Go away” and “Don’t look at me Daddy”.

She had increasingly disturbed sleep and we felt such huge waves of grief as we stood over her bed, studying her innocent face. We wept over her – desperate to know what was tormenting our beautiful girl.

She would plead with us to help her but we couldn’t. We just couldn’t. And no one else could either.

Fighting in vain

We were terrified. We found ourselves amongst panic and desperation, appointments and trips to A&E, and blood tests and medication.

But despite our best efforts to help, her anxiety took her. She was no longer there. The grief was overwhelming…a deep, deep groaning pain. We watched our tenacious and fun-loving little girl completely disappear – replaced with an anxious, angry and distressed child who was in constant, irrational ‘fight or flight’ response.

We hit a dead end when the NHS did not know how to help her. We banged on door after door in a fight to find some answers – but it was in vain. The feelings of desperation and helplessness still haunt us.

The following year brought some gradual recovery and we saw glimpses of our sweet girl return to us. The relief as her torment started to ease was enormous. “She’s coming back to us” we recall saying to one another, and others.

She even attempted mainstream school that Autumn. She was so eager to learn and she gave it her all. We are so proud of how long she kept going – academically and socially thriving, despite her difficulties.

However, we were still searching for answers and regretfully did not realise that her brain was inflamed and injured, and that stress alone can exacerbate this. Work she could previously complete with ease quickly became a source of severe anxiety for her as she struggled to undertake it any longer. “It’s too hard mummy, it’s too hard” she would cry as the pre and post-school meltdowns took hold. The fall-out from a day in the classroom became huge.

By term two the days at school turned into a few hours and even these were spent in a side room away from the other children, noise and overwhelm.

She didn’t make it through her reception year. We had assumed that with the pressure of school off her we would start to see an improvement once again. But it didn’t work that way and she continued to decline, unable to leave the house – complaining of tiredness to a point where she had to be carried from the car into her appointments.

A terrible shock

Later that year a referral was made to a neurologist, who saw her urgently. We attended the appointment with the hope that our daughter’s difficulties were finally being taken seriously. We assumed that if there was recognition of a medical problem then surely there was some treatment? Some hope?

We have little memory of the consultation. There are huge chunks of it that are missing from our minds. We realise now it was shock – a “grief reaction” as the consultant called it.

What we do recall was searching the consultant’s face for a hint of something – anything – that might bring hope. When that reassurance didn’t come, we were overcome with anguish and disbelief. The consultant – a kind and compassionate man – tried his best to console us.

It became clear after various assessments, scans and investigations that Molly had been left for too long without help. The inflammation in her brain had damaged it. The resulting, Acquired Brain Injury has seen a continued decline in her cognition, behaviour and emotional regulation. She has been left with severe dysexecutive syndrome, amongst many other overwhelming and life-changing challenges. Even basic skills such as reading and writing – which she once thrived at – are now unobtainable.

Despite a 6-year fight for help, her team of therapists and clinicians are left unable to make any inroads. We are simply watching her continue to decline and it has become increasingly impossible to manage her within the home environment, yet accessing any kind of setting continues to be beyond reach.

Inadequate help

We secured her a package of support through an appeal to the courts 2 years ago but it remains inadequate to meet her extremely high needs – with every service passing the buck in a bid to protect their own budget.

Every single system in this country has failed her. The NHS has not had the expertise or resources to appropriately manage and treat her. An application by her neurologist for treatment of her misfiring immune system (Intravenous Immunoglobulin Therapy) to stop its further attack on her brain was rejected over 2.5 years ago and nothing has been done to stop her decline since. This is a treatment which is routinely available in other countries, but not within the NHS and which – if offered early enough following onset – can completely reverse the inflammation.

Following endorsement from our daughter’s medical team we have been forced to seek expert help with her health needs from abroad which has had to be privately funded.

3.5 years after discovery of her cyst we still do not know what impact it is having. It’s possible that more specialised scans may be able to shed some light on her brain function, but the NHS is unable to fund this. In the meantime she remains under the care of a neurosurgeon, who is still exploring all options.

She has been awaiting neuropsychology input for many years. Despite an initial neuropsychology assessment with the NHS 3 years ago the service does not offer re-assessment or ongoing support due to being inadequately resourced. Over 6 years after onset she still does not have appropriate psychological intervention.

How you can help

We never could have imagined having to appeal for funding support, but without help from others we face an insurmountable task and we are unwilling to accept that this is our daughter’s fate. Her injury means the girl we once knew has gone, but we are determined to give her the best possible future. This means doing all we can to prevent further regression and bring some healing to her brain.

Help with Healthcare – Appointment costs and related expenses, including tests and medication amount to approximately £400 a month. These are critical to addressing the ongoing immune difficulties.

Help with Therapy – The cost of a vital neuropsychology assessment is £2,500 – with ongoing costs of £220 an hour. The initial assessment plus 12 months of therapy will cost £25,380. This would take us to the date of a hearing following an appeal in an attempt to secure ongoing neuropsychology provision through the courts.

Help with Education and Care – Ongoing legal costs over the coming months for updating Molly’s Education, Health and Care Plan (EHCP) and ensuring recommendations from her team are put in place have been quoted by our solicitor at £3,144.

Our hope is that you will help us get close to our target of £33,000. This will help to fund the next year of medical treatment and neuropsychology support, as well as the most pressing legal fees. Whether it’s making a donation or simply sharing our story – you can help give our daughter a chance of a future.