EWI Store is extremely proud and excited to announce our partnership with The Lily Foundation! We’re joining the fight against mitochondrial disease and hope to participate in many fundraising events, as well as focusing on raising awareness.
Our director, James Alcock, recently participated in and finished the London Marathon (and in a stellar time no less!) with The Lily Foundation as his chosen charity. The plight of the charity touches us deeply, with exceptional support being provided to 1200 families across the UK. The growth and affirming nature of the charity and the people behind it is the reason James chose to represent it. In the face of little hope, the 1200 families, along with a deeply committed and spirited team at The Lily Foundation, continually strive to improve the lives of every patient. A disease does not only impact the individual. The whole family engages in the fight together and we hope to join that fight as one cohesive unit.
Something that resonates deeply with James is the spirit of the community. The charity started as no more than a handful of close family but has grown exponentially as we learn more and more about the disease. It is incredibly difficult to diagnose and recognise, therefore the suffering individuals and families struggle to find hope. Therein lies the power of the community created by the charity, as all families and friends come together to share experiences and grow stronger.
What is The Lily Story?
The Lily Foundation was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from mitochondrial disease at eight months old. With few answers and limited specialist support, Liz and her family set out to provide a network of support for families suffering. Through exceptional hard work and generosity, the small group has blossomed into a national charity.
Lily’s story is one of heartbreak and incredible perseverance. With her initial weight gain slowing down, Lily suffered several seizures. Multiple tests revealed that one side of her heart was enlarged and the prognosis was not positive, with Liz and Dave being informed that their beautiful girl may have mitochondrial disease. The forecast was, unfortunately, worse as doctors gave Lily no medium or long-term future prospects. After living on ventilators and morphine, the family made the decision to take her off support.
However, Lily miraculously started breathing on her own and sustained a regular breathing pattern. She continued to breastfeed, something that doctors told the family she would never do again, that if she did survive she would need to be tube fed. Lily came home on the 30th of October 2006 and slept on her mother’s tummy every single night until the end of January. Upon the next visit to the hospital, Lily was placed on high-calorie formula milk and started to gain weight and develop. She began to play and smile, and there were glimmers of hope that Lily was the miracle child to recover from something deemed ‘unrecoverable’; unfortunately, the heart treatments were unsuccessful, and she died in hospital on April 30th 2007.
Mitochondrial disease
Mitochondrial disease, also known as ‘mito’, is a category of genetic health conditions resulting from mutations in mitochondria, the tiny units in nearly every cell in our bodies responsible for generating around 90% of our required energy. The correct functioning of cells is highly reliant on healthy mitochondria, hence, their malfunction can lead to severe and diverse consequences.
The manifestation of mitochondrial diseases varies greatly, dictated by which cells are involved. This variability often complicates the diagnosis, as symptoms can mimic those of other severe ailments. An individual with mito may experience seizures, fatigue, loss of sight or hearing, cognitive impairments, respiratory difficulties, or poor growth. Any organ or system within the body, including the brain, heart, lungs, gut, liver, and skin, could potentially be affected. Notable inherited forms of mitochondrial diseases encompass MELAS syndrome, Leigh syndrome, and Leber’s disease (LHON).
At present, no known cure exists for mitochondrial diseases. Nonetheless, significant advancements have been made in accelerating, simplifying, and making the diagnostic process less intrusive for patients. Moreover, promising research efforts focusing on effective treatments for mito is currently in progress.
Research projects
The research strategy developed by The Lily Foundation focuses on the diagnosis part. Improved diagnosis has led to a larger number of confirmed patients, leading in turn to more opportunities for clinical trials. More research into diagnosis and treatment will bring fresh hope to patients and families.
Lily-funded research projects have already resulted in faster, less invasive patient diagnoses and helped families affected by mitochondrial illness to have healthy babies. The Lily Foundation currently funds the following projects:
Deoxynucleoside-based treatment for Mitochondrial DNA Depletion & Deletions Syndromes
EMERALD Pilot study: Evaluating the Tolerability and Efficacy of a Remote Microphone (Assisted Listening Device) in Adult Patients with Mitochondrial Disease
An investigation into a driver of mitophagy in personalised treatment for mitochondrial disease
Transcranial direct current Stimulation for Focal Refractory epilepsy in Mitochondrial disease (TRANSFORM)
Why EWI Store are getting involved
Whilst we continue to grow as a business, our community outreach is incredibly important to us. Many of our employees actively support their own chosen charities with monthly donations and participation in fundraising events. It is therefore fitting that the company makes a similar commitment to heavily supporting an exceptional charity. The plight of the foundation resonated particularly powerfully with our employees; the research into a disease with no cure is exceptionally important to provide hope and optimism to patients and families.
