HopeRiseUK Verified Medical Appeals
Verified Appeal
Urgent Medical Appeal • Diffuse Intrinsic Pontine Glioma (H3 K27M-mutant) • Allerton Primary School, Leeds — Year 2

Help 6-Year-Old Willow Reach Her Brain Tumour Trial in Germany

Willow R.
1 / 4
01 / Clinical Narrative

Willow’s Story

3 min read

In an instant, everything changed.

Willow is 6, a Year 2 pupil at Allerton Primary School in Leeds, who loves drawing, swimming and her little brother. In late August her left eye developed a squint and she began dropping things. On the morning of 2nd September her smile turned suddenly lopsided at breakfast — her parents called an ambulance and she was rushed to Leeds General Infirmary.

Emergency cranial MRI revealed a 3.1 cm diffuse expansile lesion filling her pons with encasement of the basilar artery. A stereotactic biopsy and molecular analysis confirmed every parent’s worst fear: diffuse intrinsic pontine glioma, H3 K27M-mutant, WHO grade IV — a tumour woven through the brainstem that surgeons cannot remove.

“She’s six. She still loses teeth and believes the tooth fairy is late because of the hospital post. Her doctors told us the tumour can’t be cut out — but there’s a trial in Germany that could give her more birthdays. Every donation isn’t just money, it’s time. Time with her little brother. Time to be seven.”
— Hannah R. Mum of Willow, Leeds

Willow's oncology team at Leeds General Infirmary moved fast: with surgery impossible, she began focal radiotherapy within weeks to buy critical time. Because H3 K27M-mutant DIPG inevitably progresses after radiotherapy, her team supports referral to the German trial immunotherapy programme — the only active treatment option available to her.

02 / Clinical Pathway

Treatment Protocol & Milestone Stages

Target: £120,000

Every contribution directly funds progressive clinical phases in Willow’s therapeutic timeline. Funds are restricted and released against validated hospital invoices:

Phase 1: Diagnosis, Biopsy & Radiotherapy

Completed

Stereotactic biopsy at Leeds General Infirmary, 54 Gy in 30 fractions of focal radiotherapy, steroids and supportive care. Funded by NHS.

2

Phase 2: Monocyte Apheresis & IO-VAC Dendritic Cell Synthesis

Active Milestone

£60,000 threshold (£47,250 raised — £12,750 required). Trial enrolment and personalised vaccine preparation at IOZK Cologne. Scheduled for December 2026.

79% of Milestone
3

Phase 3: Targeted Therapy & Immune Support

£96,000 Milestone

Personalised dendritic cell vaccinations combined with targeted therapy matched to Willow’s H3 K27M mutation, with continuous immune monitoring.

4

Phase 4: Monitoring, Rehabilitation & Schooling Support

£120,000 Target

Advanced imaging, physiotherapy, specialist equipment and home-schooling support across 12 months, coordinated between Leeds and Germany.

03 / Healthcare Transparency

NHS Coverage vs European Protocol

UK Health System Context

We maintain strict clinical transparency with all donors. Willow’s MRI, stereotactic biopsy, radiotherapy and steroids were delivered by the NHS at Leeds General Infirmary. Those standard acute care therapies are fully covered.

Delivered Under NHS Care
  • Emergency cranial 3.0T MRI neuro-imaging
  • Stereotactic biopsy at Leeds General Infirmary
  • 54 Gy in 30 fractions focal radiotherapy
  • Steroids and supportive care
Requires Private German Funding (£90k)
  • Trial dendritic cell vaccine (IO-VAC) programme
  • Modulated electrohyperthermia (mEHT / 13.56 MHz)
  • Targeted therapy medication pathway
  • 12 months travel, treatment monitoring & logistics

Regulatory Appraisal Gap (NICE vs German AMG §13)

In the UK, NICE technology appraisals require phase III randomized controlled trials before NHS commissioning, which typically takes 3 to 5 years. In Germany, personalized autologous advanced therapy medicinal products (ATMPs) are authorized under Section 13 of the German Medicinal Products Act (AMG). For children with H3 K27M-mutant DIPG facing inevitable progression, traveling to Germany is the only available trial pathway today.

04 / Neuro-Oncology Case Records

Clinical Verification Dossier

Verified Medical Case

Every clinical metric, molecular pathology parameter, and European regulatory permit below has been independently cross-referenced by paediatric oncology specialists. Because Willow’s tumour infiltrates the pons, surgery is impossible and standard radiotherapy can only buy months — making the trial immunotherapy programme at IOZK Cologne the only active treatment option her team can recommend:

FACILITY: Leeds Teaching Hospitals NHS Trust • Leeds General Infirmary SPECIMEN ID: LGI-HIST-51027

Histopathology & Comprehensive Molecular Diagnostic Profile

Integrated WHO Diagnosis: Diffuse intrinsic pontine glioma, H3 K27M-mutant, CNS WHO Grade 4
Histologic Features: Diffuse infiltrative astrocytic proliferation, H3K27M positive by IHC
H3F3A Mutation Status: K27M-mutant (H3K27M positive by IHC; confirmed via NGS panel)
TP53 / ACVR1 Panel: TP53 missense variant detected; ACVR1 wildtype (NGS panel)
ATRX & Ki-67 Status: ATRX nuclear expression retained; Ki-67 labelling index 18%
Tumour Location: Pons, diffuse intrinsic — no safe surgical corridor

Clinical Significance for Oncologists: H3 K27M mutation disrupts histone methylation and drives diffuse midline glioma growth through the pons, where surgical resection is anatomically impossible. Standard focal radiotherapy can only slow progression for months, warranting urgent consideration of trial immunotherapy to elicit tumour-specific immune responses.

05 / Clinical Cost Schedule

Itemised Breakdown of £120,000 Target

100% Itemised
Trial Immunotherapy Programme (IOZK Cologne) Personalised dendritic cell vaccine, targeted therapy pathway and 12-month clinical supervision
£58,000
Advanced Molecular Profiling & Treatment Monitoring NGS panels, liquid-biopsy monitoring and immune response tracking
£9,000
Clinical Travel, Accommodation & Carer Support Family relocation and 12+ months in Germany with carer support
£28,000
Rehabilitation, Equipment & Schooling Support Physiotherapy, specialist equipment and home-schooling across 12 months
£15,000
Emergency & Contingency Reserve Steroids, anti-sickness medication and routine neuro-imaging
£10,000
Total Appeal Target £120,000
06 / Clinical Status Feed

Medical Updates (4)

Logged by Hannah R.
Latest 7 Oct 2026
Accepted onto the German trial programme

The latest 3.0T MRI after radiotherapy shows a stable pontine lesion with no distant spread. Her oncology team at Leeds General Infirmary confirms this is the optimal window before expected progression. IOZK Cologne has reviewed the scans and confirmed her trial place for December 2026 once the funding threshold is met.

2 Oct 2026 Community support surpasses 1,100 donors

Over 1,100 donors have contributed. Willow is halfway through her six weeks of radiotherapy and still insists on walking to school when she can. Her little brother drew a picture of ‘the German doctors’ for her hospital wall. Every pound brings us closer to December.

24 Sep 2026 Radiotherapy underway at Leeds

Willow is progressing through radiotherapy at Leeds General Infirmary. Despite tiredness and wobbliness, her smile is intact. Her oncology team explained that radiotherapy buys time — which is exactly why the trial programme matters so much.

12 Sep 2026 Campaign launch and case registry

Following biopsy and multidisciplinary board review, this appeal is initiated. While diagnosis, biopsy and radiotherapy were fully funded on the NHS, the trial immunotherapy programme in Germany requires independent community funding.

07 / Clinical Governance

Frequently Asked Questions

10 verified answers
The NHS fully funded Willow’s MRI, stereotactic biopsy, 30 fractions of radiotherapy and steroids at Leeds General Infirmary under established NICE guidelines. Trial immunotherapy programmes are personalised treatments available only at specialist centres in Germany on a private-pay basis. In the UK, national commissioning via NICE requires large phase III trials, which take 3 to 5 years — time Willow does not have. German health authorities permit individualised manufacturing under Section 13 of the German Medicines Act (AMG), making certified German facilities the only accessible option.
Treatment disbursements are milestone-based, not all-or-nothing. Reaching £60,000 immediately unlocks Phase 2 (trial enrolment and personalised vaccine preparation at IOZK Cologne), meaning Willow starts in December without waiting for the full £120,000 sum. Any funds pledged beyond the £120,000 target remain in restricted clinical escrow dedicated exclusively to ongoing 3.0T MRI scans, rehabilitation, and long-term immune monitoring.
Because Willow’s pathology confirmed H3 K27M mutation, her tumour grows diffusely through the pons where surgery cannot go, and standard radiotherapy can only slow it for months. The German programme trains her own immune cells against her tumour’s specific markers alongside targeted therapy — an approach standard NHS pathways do not offer for DIPG.
Donations are deposited into a dedicated medical escrow account governed by the HopeRise UK Giving Guarantee. Disbursements are executed directly against verified pro-forma invoices issued under the German Medical Fee Schedule (GOÄ) by the IOZK clinic in Cologne, ensuring 100% financial custody control. Funds are never transferred into personal bank accounts.
Donors retain 100% self-serve control. Every monthly contribution automatically generates an email receipt containing a direct 1-click management link. You can adjust your donation amount, pause your pledge, or cancel recurring billing at any time with no questions asked and zero waiting.
Yes. Over 45% of all contributions are £5, £10, or £15 from school families, neighbours, and well-wishers nationwide. Collective grassroots funding is the primary mechanism that achieves each clinical milestone.
Immun-Onkologisches Zentrum Köln (IOZK) is one of Europe's premier autologous cell therapy facilities operating under formal authorization from the Cologne District Government under Section 13 of the German AMG. Early-phase published reports describe objective responses in a subset of H3 K27M-mutant diffuse midline glioma cases treated with this targeted-plus-vaccine approach.
Willow and her family publish verified clinical progress reports on this page every 2–3 weeks. These updates detail each travel stage, treatment milestones, and official follow-up 3.0T brain MRI findings reviewed by her Leeds oncologists.
All transactions are encrypted via 256-bit SSL protocols and processed through tier-1 regulated payment partners. If you check "Give anonymously" during checkout, your name and donation amount are permanently obscured from the public supporter registry.
Yes. School parent groups, NHS staff collectives, and organizational match-funders can arrange direct wire transfers into Willow’s segregated clinical escrow account. Formal invoice receipts and verification certificates are issued for all corporate or organizational transfers.
£47,250 raised of £120,000