"Fighting a disease with no cure, dealing with constant fear and uncertainty, we are used to this, it's our life. It's strange, now the whole nation is experiencing something that we've been living with for years. But now it's even more difficult. We feel even more vulnerable."
For Angela Barton, and any parent of a child with a mitochondrial disease, the Covid pandemic carries an extra level of risk. Angela's son James has Leigh syndrome, a type of mitochondrial disease that can cause profound physical and mental disabilities. James' condition means he has an impaired immune system, so a reduced capacity to fight infection. Even a common cold can pose a serious threat, and Angela knows that if he comes into contact with the virus, her worst fears would be realised.
"We are terrified that something will happen," said Angela. "If James gets infected, he won’t survive. He picks everything up, if there’s a cold going around, he gets it. And his body just isn’t strong enough to fight something like coronavirus. So it's life and death."
Angela and her family are not alone. The Lily Foundation supports hundreds of families with children who have a mitochondrial disease, and adult patients who are concerned about the pandemic. Even in normal times, these households often feel vulnerable and isolated, and struggle to access the help they need. Now, as the pandemic shatters already precarious support networks, many are facing a perfect storm of emotional, financial and medical challenges.
You're told to adopt shielding measures to protect your child from the virus, but that's very difficult when your child depends on you for dressing, feeding, showering and going to the toilet."
"Everyone in the mito community is scared," said Angela, who uses the Lily Foundation's Facebook group to stay connected with other mito families. "You see the same stories again and again. When a child is at risk, it impacts the whole family. You're told to adopt shielding measures to protect your child from the virus, but that's very difficult when your child depends on you for dressing, feeding, showering and going to the toilet. You're in constant fear of infecting them."
In the first weeks of the pandemic, government advice for people with rare diseases was virtually non-existent, leaving many people affected by mitochondrial diseases exposed. The Lily Foundation reacted quickly to fill this gap in care, launching a dedicated coronavirus webpage and contacting patients and their families with mito-specific medical updates.
Lily also came to the rescue when an administrative oversight meant hundreds of mito patients were left off the government's list of extremely vulnerable persons (denying them access to priority shopping deliveries and other vital services). Lily staff contacted GP surgeries to speed up the registration process, helped patients complete the necessary paperwork, and in some cases even phoned supermarkets directly to arrange deliveries.
"We are so grateful to The Lily Foundation, they have been amazing," said Angela. "They have been so supportive, calling and posting advice, and helping us register James as a vulnerable patient. We've been involved with the charity for years, and now more than ever it makes a huge difference knowing they are there."
How we're making a difference
The Lily Foundation is working hard to support people with mitochondrial diseases through the coronavirus pandemic. Here are some of the steps ways we're making a difference:
- We have launched a webpage with coronavirus health updates specific to people with mitochondrial diseases. We keep patients and their families informed about these updates via email and social media.
- We have a dedicated helpline for people who need urgent support with non-medical issues, such as shopping deliveries, prescription medication, benefits advice or contingency care.
- We are working to ensure hundreds of mito patients are registered on the NHS as 'extremely vulnerable persons', so they receive their government letter entitling them to priority care.
- We support shielding families with online activities, games, quizzes and fundraising initiatives.
- We have launched a dedicated mental health service to support young adults affected by mitochondrial diseases.
How you can help
In these challenging times, the work we do at The Lily Foundation has never been more important. People affected by mitochondrial diseases are more vulnerable than ever before. In recent weeks, our charity has received hundreds of calls from families struggling to cope with the impact of self-isolation, while facing the terrifying prospect of a seriously ill loved one coming into contact with the virus.
Many of the usual support structures on which these families rely have vanished overnight. Schools and hospices have closed, friends and volunteers are unavailable, GP surgeries and community services are overstretched. Urgent help is needed, and with the government slow to respond, charities like ours are essential to fill the gap in care.
This has come at a time when charities themselves face unprecedented challenges. For The Lily Foundation, the cancellation or postponement of a summer's worth of fundraising events is a major blow. We are doing all we can to mitigate for this, but to keep supporting people with mitochondrial diseases through this pandemic, we need your help.
- Please donate today. Every donation makes a difference, no matter how small.
- Spread the word. Encourage others to donate, and to take part in our virtual fundraising events.
- Keeping fit this summer? Sign up to our My Mito Miles campaign and make every step make a difference.
- Subscribe to our newsletter, social media and YouTube channels to stay informed about Lily news and events.
Mito families need our support now more than ever before. Thank you for helping us make a difference and improve lives.