Caring for the carer – how Lily is there for everyone affected by mito - News - The Lily Foundation
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Caring for the carer – how Lily is there for everyone affected by mito


10 June 2024

Living with a mitochondrial disease diagnosis, and all the challenges the condition brings, is an incredibly difficult journey for any patient. However, sometimes we forget about the people behind the scenes doing the demanding but vital job of caring for those patients.

Lily CEO Liz bends down to hug a young girl while her family stand around smiling

This Carers Week (10th-16th June), please consider making a donation to help us continue our work supporting the unpaid carers who make incredible but often unseen contributions, playing a vital role in the care and wellbeing of loved ones with mitochondrial disease.

A carer is anyone who provides unpaid care and support to a family member with a disability, illness or who requires extra support. Whilst invaluable, this work can also be challenging, and carers don’t receive any payment for the work they do. Because of that, carers can sometimes get forgotten, but not by us. Here are just some of the ways The Lily Foundation are there for everyone affected by mitochondrial disease.

Wish Fund

Our Wish Fund is a grant scheme set up to provide mitochondrial disease sufferers with financial support to access something to improve their life, and that extends to carers too. They, as much as the patient, will feel the benefit of a respite break, an improvement to the home or garden or a piece of specialist equipment that makes it easier for a patient to get out of bed or move around more easily.

Virtual get-togethers

The coffee mornings and evening catch-ups we run over Zoom aren’t just for mitochondrial disease patients. Anyone caring for a loved one with mitochondrial disease is welcome to come along and will certainly benefit from socialising with others in a similar situation, exchanging experiences and forging new friendships.

Benefits advice

One important aspect of caring for a loved one is ensuring they have access to the relevant financial assistance. Understanding what they may be entitled to, and applying for that support, can be time-consuming and confusing, and that’s why our Benefits Adviser, Chrissie, is on hand to help navigate the money minefield.

Rareminds counselling service

Looking after a loved one day in, day out can take its toll, and there are times when we all need someone to turn to for emotional support. We work in partnership with specialist rare disease counsellors Rareminds to offer a free, confidential service for anyone impacted by a mitochondrial disease diagnosis.

Family Support Weekend

No parent of a child with mitochondrial disease gets much of a break from the day-to-day routine. So imagine a weekend designed specifically for them to relax, mingle with like-minded people in similar situations, create new connections and learn more about mitochondrial disease from medical professionals – all while their child is taken care of with a host of fun activities… Well, that’s the Lily Family Weekend in a nutshell!

Young Adult Support Weekend

Whilst this fun-filled weekend gives young people with mitochondrial disease the chance to participate in a host of outdoor activities in the Lake District, parents and carers can join in and enjoy new experiences too. And we know from feedback that the social aspect of the weekend is just as important to everyone as the activities themselves.

Adult Support Weekend

Many adults affected by mitochondrial disease feel that there aren’t any opportunities for them to spend time with other adult mito patients. That’s why, later this year, we’ll be running our first Adult Support Weekend, a short break designed to provide a safe space for patients and their carers to relax and unwind.

Patient Information Days

A carer of someone with mitochondrial disease may have as many questions about the condition as a patient, and there aren’t always opportunities to get answers. The specialist mitochondrial disease clinics at Newcastle, London and Oxford host these informal occasions throughout the year, giving patients and carers the chance to quiz the professionals, as well as learn more about our work.

Social support

Our private Facebook groups are an informal way to mix with others in the same situation, share information, ask questions and make lasting connections. Patients and carers alike can also find a host of further resources and practical advice on our website, while our social channels and monthly newsletters are filled with information, updates and real-life stories.

A caring community

The Lily Foundation are here to provide ongoing support to anyone affected by a mitochondrial disease diagnosis, and that extends to carers too. This Carers Week, please consider making a donation to help us continue that work. Whether they’re a parent, a child, a spouse or a sibling, no carer who joins the Lily ‘family’ will ever have to face the challenges of mitochondrial disease alone.

Donate today

This Carers Week, please consider making a donation to help us continue our work supporting everyone affected by mitochondrial disease.