Help Darren Live With Dignity and Relief From Constant Struggle
Darren Brook is 52 and living with a cruel, incurable, progressive muscle-wasting disease. As a result, he is now severely physically disabled. He has extremely limited mobility, is permanently wheelchair-bound, and can no longer transfer or move without assistance. He cannot self-propel and is dependent on 24/7 care — provided entirely by his wife, who has been his full-time carer for many years.
“My wife helps me with every aspect of daily life — from getting out of bed, to managing medication, to comforting me during panic attacks. She hasn’t had a full night’s sleep in years."
But Darren's condition doesn't exist in isolation. He also lives with a long list of serious and chronic health issues including lymphedema, type 2 diabetes, polycythaemia, OCD, PTSD, panic disorder, IBS, visual migraines, chronic depression, health anxiety, severe generalised anxiety, hypertension and more. He is in pain daily — and painkillers only help to a limited degree.
The cost of living with this reality is enormous.
What Darren Needs Help With
How Much Are We Trying to Raise — and Why?
Darren urgently needs £9,000 to cover essential one-off medical and mobility items, plus around £650 per month in recurring, unavoidable disability-related expenses.
These two needs are equally critical. The total goal reflects both: the most urgent equipment and treatments Darren has already had to go without, and a realistic level of support for the near future — helping to stop things getting worse.
If support grows, we hope to extend that help over time and build a more sustainable level of care for Darren and his wife to relieve the crushing monthly pressure that affects his health, security and peace of mind.
One-Off Essential Items and Treatments (Approx. £9,000)
Darren needs more than one wheelchair. However, these are not always provided by the NHS and in many areas, it is limited to one. In addition, many are simply not available via the NHS. A wheelchair can cost thousands of pounds, with some costing more than £10,000. They also need to be maintained, serviced and repaired.
Including:
- Second wheelchair
- Hearing impairment speaker
- Microphone for hearing aids (not supplied by NHS)
- Private audiology assessment for hearing distortion
- SF Touchscreen
- High-grade custom lymphedema stockings (these ones not on NHS)
- Custom Jay wheelchair cushion and riser
- Pressure-relief mattress and cushions
- Other items for existing wheelchair not provided
- Mobility scooter (for limited outdoor use if needed)
- Custom AFOs (not available via NHS)
- Targeted physiotherapy
- Therapeutic equipment
- CTS trackball, large Stream Deck, and other assistive computer tech
- New glasses
- Repairs to teeth (from damage done when he was attacked. NHS dentist wait to register exceeds 5 years)
- Household items to assist with daily living
- Face-to-face CBT (long NHS wait, limited sessions)
- Podiatry (private, due to no NHS provision)
- Emollients, toiletries, bedpans, liners, and custom supports
- Air purifier or dehumidifier (for respiratory health)
- Dietary costs, custom shoe holders, non-slip pads
- Specialist equipment and more
Recurring, Unavoidable Monthly Costs (Approx. £650/month)
Including:
- Gas cylinders and heating
- High utility bills (water, extra washing, higher usage due to disability)
- Petrol (without which they cannot leave the house)
- CBT/Physio
- Toiletries, emollients, dietary needs
- Car parking costs for hospital visits
- Help with carer-related costs (his wife is unpaid)
- Extra day-to-day bills that pile up due to disability
- Over-the-counter medications not covered by NHS
- Device and equipment maintenance
- Extra bedding/towels (replaced more often due to hygiene needs)
- Haircuts/home visits for hygiene/grooming
- Increased wear-and-tear costs on home and furniture
- Costs caused by NHS service gaps and postcode inequality
Disability benefits like PIP fall far, far short of what is needed to cover these essential and unavoidable expenses. The system is broken — and Darren is trapped in it. Every month, debt increases. Every month, something necessary is sacrificed. And every month, Darren’s condition progresses, making his needs greater and his options fewer.
What is the Cost of Disability?
Life costs more if you are disabled - a lot more. This is due to a wide range of high, extra costs. These vary but they are unavoidable costs. They are about needs. These costs have been rising for years. You can read more about this here: https://www.scope.org.uk/campaigns/disability-price-tag
Why This is So Urgent Now
Darren and his wife are at breaking point.
NHS services have deteriorated. Wait times are measured in years. Many items and treatments are simply no longer available at all, or only exist for people living in the "right" postcode — and Darren doesn't. Citizens Advice have run out of ideas. There are no grants left that apply. Financial strain has become intolerable, and both Darren and his wife endure sleepless nights, mental torment, and constant anxiety just trying to survive.
The cost of disability is crushing — emotionally, physically, and financially.
Who Darren Is
Before illness stole his ability to work and his independence, Darren loved music. He used to play piano, keyboards, and guitar — but his condition has slowly taken away his hands. He can no longer play, and now even listening is difficult: a distortion in his right ear, unrelated to tinnitus, leaves music painful and unrecognisable. It’s suspected to be another cruel effect of his progressive illness. There is no fix. No aid. No clarity.
After doing everything he was supposed to do, he’s already lost so much — his work, his mobility, his hobbies, his health. But he’s still here. Still trying.
How You Can Help
Darren and his wife are simply asking for the chance to live with some dignity, comfort, and peace — not luxury, just survival without constant fear and hardship.
The help he urgently needs isn’t coming from the government, the NHS, or anywhere else — so it now depends on the kindness of strangers.
Disability can turn your life on it's head and push you into a deep well of needs, high extra costs and debt. You can't get out of it alone. You can't do it alone.
Any support, no matter how small, would mean the world. It could ease daily suffering. It could stop the spiral. It could bring back some quality of life that has long been lost.
Please — if you can donate, it will make a real and lasting difference. If you can share, it helps even more. Darren isn’t asking for miracles — just the chance to breathe and live again.