Please Help Maya Reach Intensive Neuro-Rehabilitation After Palliative Radiotherapy
- dellanienash9
- 4 days ago
- 6 min read
Before we begin this update, we wanted to apologise for being quieter than usual on Maya’s page.
The reality is that since Maya was discharged home on 30th March, life has looked very different for our family. Our new normal involves navigating life with a profoundly disabled child whilst simultaneously fighting for the basic services, equipment and adaptations she needs simply to live safely and with dignity.
Much of our time has been spent attending appointments, making phone calls, sending emails, chasing referrals, and advocating for Maya’s needs alongside our work and caring responsibilities.
To give you an idea of what the last two months have looked like:
• 30th March – Maya was discharged home after five months at Great Ormond Street Hospital.
• 31st March – Occupational Therapy [OT] Home Adaptations Team visited to assess our home.
• 2nd April – Social Work Assistant for Disabled Children home visit.
• 20th April – Maya finally received her wheelchair. After three weeks at home, she at last had a wheelchair of her own.
• 21st April – The tracking hoist installation team visited to assess the bathroom and take measurements.
• 27th April - Demelza Hospice Team came to introduce themselves and explain as to what support they could offer
• 30th April – The Incontinence Team finally visited, a full month after Maya was discharged home. During that time we were left without access to the continence products Maya requires. Thankfully, the incredible generosity of Maya’s supporters helped bridge that gap.
• 11th May – Maya was awarded a charitable grant to help pay towards the advance payment and adaptations required for a Wheelchair Accessible Vehicle (WAV).
• 20th May – We attended a WAV demonstration, only to discover the vehicle offered was unsuitable. Maya’s wheelchair could only fit if not reclined, to leave Maya sat upright at 90 degrees, leaving her uncomfortable and unable to travel safely for long periods.
• 27th May – The tracking hoist installation team returned, only to abandon the installation because they did not bring the correct drill bits. After assessing and measuring the property more than a month earlier, this was incredibly frustrating! So Maya has no access to a bath for two months, and I find this unacceptable at a every level.
• 27th May – We attended a second WAV demonstration with Allied Mobility. This vehicle was much more suitable for Maya’s needs, but unfortunately there are no vehicles currently available. We have been advised that the waiting time could be at least two months, potentially until the end of July or beginning of August.
Alongside all of this, our local MP, Tony Vaughan, has been advocating on Maya’s behalf regarding the delays surrounding her WAV and home adaptations.
As things stand, Maya still does not have an adapted bedroom. She currently sleeps in our family living room. She does not have access to a suitable bathing facility. Without a WAV, her ability to access the community, rehabilitation, play opportunities and everyday childhood experiences remains significantly restricted.
These are not luxuries.
These are basic needs for a disabled child.
So if our updates have been less frequent, it is because much of our energy has been spent fighting for things that should already be in place.
We remain incredibly grateful for every message, every share, every donation and every person who continues to support Maya. Your kindness helps carry us through some very difficult days.
Now, onto Maya’s latest update…
On 7th May, Maya underwent radiotherapy for her Neuroblastoma at The Royal Marsden Hospital Sutton.
And this video showed how we found out that a small WAV isn’t going to be appropriate for Maya
Oftentimes, my husband Terry and I sit quietly and wonder how much one child can possibly endure.
On 28th October 2025, Maya entered Great Ormond Street Hospital [GOSH] as an able-bodied little girl. CAR-T cell therapy was meant to help save her life, but instead it left her with devastating complications — severe CRS (Cytokine Release Syndrome), severe ICANS (Immune Effector Cell-Associated Neurotoxicity Syndrome), and HLH (Haemophagocytic Lymphohistiocytosis).
Complications so catastrophic that Maya is now profoundly physically disabled.
And despite surviving all of that… we are still here fighting childhood cancer.
Sometimes it feels like the universe simply hasn’t been kind to Maya or our family.
What hurts almost as much as watching your child suffer is hearing the occasional cruel or thoughtless comments from people who have absolutely no idea what this journey costs a family.
“It’s a clinical trial, so you just have to get on with it.”
“She’s been fighting since she was 3 years old, she’s probably used to this.”
But we refuse to let bitterness or unkindness crush our spirit.
Because even now — in hospital corridors, during radiotherapy appointments, through wheelchairs, medications, exhaustion and grief — we still find joy in the smallest things.
A smile.A cuddle.A song.A sunset.A moment of laughter.
And one thing cancer will never, ever take from Maya is HOPE.
Hope that one day there will be healing. Hope that Maya’s story matters. Hope that kindness will always speak louder than cruelty. Hope that our little girl will keep showing the world what courage truly looks like.
Maya continues to fight with a strength most adults could never imagine.
On Monday 1st June, Maya is due to start intensive neuro-rehabilitation at The Children's Trust in Tadworth, Surrey. After spending five long months at Great Ormond Street Hospital, Maya made it very clear that she did not want to stay as an inpatient again. More than anything, she wants to come home each day to be with her family and her beloved fur babies.
This means travelling from Hythe, Kent to Tadworth and back every weekday. The round trip is approximately 130 miles per day, five days a week, creating significant fuel and vehicle costs at a time when our family is already under immense financial pressure.
However, if it means Maya can sleep in her own bed, be surrounded by the people and animals she loves, and still access the specialist rehabilitation she desperately needs, then we will make that journey every single day.
If you would like to support Maya's journey, any contribution towards travel costs would mean the world to our family.
Donations can be made via PayPal or bank transfer.
PayPal as a gift to
Reference: Maya’s Journey
Bank transfer to Santander
D C Nash
Sort code 09-01-36
Account 49579984
Reference: Maya’s Journey
I was told Santander sometimes decline transfer so:
Bank transfer to Lloyds Bank:
Mrs Dellanie Nash
Sort code 30-93-34
Account 40263960
Reference: Maya’s Journey
The reality is that travelling this distance five days a week in our Toyota Land Cruiser (we still haven’t got a WAV!) will be costing our family approximately £285 every week in diesel alone at current fuel prices. Maya’s placement is scheduled for 12 weeks, meaning these costs will continue for months on top of everything else we are already facing.
This placement is not a luxury, a choice, or an optional extra.
It is an intensive neuro-rehabilitation programme that Maya desperately needs simply to try to regain the abilities she had before her admission to GOSH.
After everything she has endured, we are not asking for her to achieve new milestones; we are fighting to help our daughter recover what illness has already taken away.
As Maya’s parents, we would travel any distance and bear any burden to give her the best possible chance of recovery. However, the financial reality is becoming overwhelming. Every week brings another substantial fuel bill, on top of the countless additional costs that have accompanied Maya’s life-changing disabilities since her discharge home.
It is difficult to put into words the emotional impact of this situation. Our days are already consumed by caring for a profoundly disabled child, managing complex medical needs, attending appointments, and trying to navigate the endless (broken) systems that surround Maya’s care. The added financial pressure of funding these journeys ourselves feels like yet another obstacle placed in front of a little girl who has already faced more than any child should ever have to endure.
We will continue making these journeys because Maya needs this rehabilitation and because she deserves every possible opportunity to recover. But the reality is that the cost is placing a significant and unsustainable strain on our family at a time when our focus should be on supporting Maya through her rehabilitation, not worrying about how we will afford to get her there.
Every share, every donation, and every kind word helps us continue fighting for Maya's future.
Because whilst cancer has changed Maya's life forever, it has never taken away her courage, her smile, or our hope.
And we will continue fighting right beside her.
Thank you all if you managed to have read this far and THANK YOU everyone for continuing to support Maya’s cancer journey and tirelessly sending their financial help, unconditional love and so much compassion. May you all be blessed more!
We pay kindness forward, as always!
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