Zara Jones' recovery and rehabilitation

Hi, my name is Martin and I need your help to give Zara the best possible opportunity at rehabilitation following her misfortune at Christmas last year (please read her full story below, as written by her father). I'm fundraising for Zara on behalf of her loving family. Her father, Reece, is a fellow firefighter and our watch is looking to raise funds for:

· Private mainstream and supplemental therapies and rehabilitation to support those available to Zara on the NHS after her discharge from hospital.

· Any equipment and home modifications that would benefit her that fall outside what is available to Zara through the local authority and the NHS.

· Interim short-term care and costs to enable us to return to work.

· If there is any surplus, this will be donated to the Child Brain Injury Trust and the Kings College Hospital Charity.

Thank you very much for taking the time to read Zara's story (below) and the sequence of events that have brought us to GoFundMe and thank you so very much for any help you can give this wonderful little girl. Please also read the update at the end of her story.

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Zara's Story -

Our beautiful 2-year-old daughter Zara suffered a serious and prolonged ‘status epilepticus’ seizure at home on Christmas day and was rushed to hospital. During the seizure, the oxygen supply to her brain was compromised and she suffered a massive secondary brain injury as a result (Hypoxic Ischaemic Encephalopathy) which has caused significant damage to multiple areas of her brain. The seizure lasted over an hour and only stopped when she was placed in an induced coma and on a ventilator in paediatric intensive care. She had an emergency life-saving craniotomy surgery on 30th December due to a dangerous build-up of intracranial pressure. She remains in hospital now, more than 2 months later, and is likely to be there for some time.

We have been to hell and back as a family, experiencing every emotion imaginable. Denial, hope, despair, even grief and mourning for losing the little girl we know and love despite her still being alive. We are mentally and physically exhausted, having been by her bedside 24/7 since her injury with little to no respite whilst trying to maintain a semblance of normality for Zara’s 6-year-old brother Asa, who is also totally heartbroken. We have been in meetings with senior neurology and neurosurgical consultants, feeling like we are in a dream, listening to words and phrases like ‘disabled’, ‘significant brain damage’, ‘right side weakness or paralysis’, ‘manage your expectations’, ‘visually impaired’, whilst being shown the results of her multiple MRI and CT scans which show the grey areas of damage all over her brain. We were warned she may never be able to walk, talk or eat again.

Zara spent several weeks in intensive care, mostly in a medically induced coma and on a ventilator, then a short spell in the high dependency unit, before finally moving onto the neurosurgical rehabilitation ward where she remains. As well as recovering from major surgery and her brain injury, she has had lots of secondary battles along the way too – fentanyl withdrawal from the high doses she was receiving in intensive care, contracting COVID, a serious UTI, constipation and most recently Chicken Pox. She is on a cocktail of drugs to manage her symptoms and reduce the risk of further seizures.

She is now on a neuro-rehabilitation pathway, having daily Physiotherapy, Occupational Therapy and Speech and language therapy. She has made significant progress and is already doing things we were warned she may never do again. She has a long way to go and is unlikely to ever be the same again, but she is fighting all the way. She can now sit upright, can weight bear on both legs, has begun to walk with some assistance, has a small amount of speech and can eat solid foods. Her feeding tube has been removed. Her therapy team are cautiously optimistic that she may be able to walk again one day. Until recently she was blind but has now begun to regain some of her vision, although this remains significantly impaired. She also has a significant neglect weakness to her right-hand side and is unable to use her right hand. She is now allowed home for weekend leave for the first time, which has been a very emotional experience, as it was the first time we had all been together at home as a family since Christmas day.

Zara had already suffered so much in her short life, and for this to happen to her is just unbelievably cruel. She was relinquished into care at birth and went to a foster home directly from hospital at 4 days old. She was placed with us at 11 months old and we legally adopted her just over a year later. She was very angry, distrusting and guarded and it took us a long time to win her trust. We had only recently begun to really get to know her properly.

The future is still very uncertain for all of us. We want to make sure that Zara has access to the best and most suitable equipment, therapies, rehab and education opportunities when she is finally discharged to ensure she is able to reach her full potential. We will also need to fund some of her care as we will both need to return to work in the near future, despite our employers being very supportive and helpful so far. Caring for Zara full-time is not an option for us financially, the incentives and benefits on offer do not come close to covering the shortfall of losing one of our salaries and our home would be at risk. It is unlikely that Zara will ever be able to access mainstream education.

We are just at the start of our journey with Zara as she is now and we need all the help and support we can get. Emotional, physical, financial, and everything in between. It’s going to be a long road ahead but we are determined to fight for her all the way.

---Update---

We are totally overwhelmed with the support we have received in such a short space of time, thank you all from the bottom of our hearts. Zara continues to go from strength to strength and surprises us every day. We have been in discussions with a specialist therapy provider in North London called CPotential https://cpotential.org.uk/. When Zara is discharged, we will take her for an assessment, and they will plan a program of therapy for her. They offer cutting-edge specialist therapies for children with brain injuries such as CIMT (Constraint-induced movement therapy), Molii suit (Exopulse), Galileo whole body vibration, Music therapy, Conductive education, and lots more. We are really excited about the possibilities this will give to Zara.