As the Drink Tea for MND fundraising campaign gets underway this month, event ambassador Lily Chen has been encouraging as many people as possible to get involved while also sharing the story of her own experience living with Motor Neurone Disease. The native of Fujian province in China currently lives in the county Louth village of Termonfeckin, where she runs Lily’s Tea, the specialist brand she founded in 2012.
“As a busy mother and the owner of our tea business, I was health conscious. Most mornings I would run a 5k on our beach. I felt invincible. One day in 2016 I noticed my left arm suddenly could not lift the cooking pot. Then in May 2019, my voice got slightly slurred. I stumbled and fell a few times when I was out running.”
A series of medical tests subsequently revealed that Lily had PLS, a slowly developing form of Motor Neurone Disease. The experts couldn’t say what caused it, or how it would progress. The only thing of which they were certain is that there was no cure. Eventually, “all the natural abilities I took for granted such as swallowing, speech and mobility started weakening, like an invisible hand that is turning down my power gradually.”
In the three years since her diagnosis husband Dom has been her rock, taking on all the household chores and helping run the business, while Lily says that, “as a foodie, I insist on cooking most of the time, albeit at a much slower pace. While I am not one who would fall for false hope, I have yet to find a better alternative. So we live as positively, and as normally as possible.”
This effort to maintain some normality for the couple and their family includes continuing to run their business, and Lily credits Supervalu and a number of local independent retailers who have helped keep her going, saying that they have been tremendously supportive. “Thanks to them we can keep running our tea business which we enjoy doing, although it’s challenging, like every small business.”
Lily has also been maintaining long distance family relationships over Zoom, but as the disease progresses that has become more difficult. “My regular online chats with my mum in China are more like a silent old film now with me doing all the nodding. Although travel will be a big challenge, I am still secretly hoping after Covid I can one day travel again to China to see my mum.”
“I don’t think there is any silver lining in MND. However, it brings my friends closer. They rally around and make a routine to have tea with me regularly. I get to see them more often now than I did before, which is lovely.” Lily says that the staff of IMNDA have also been very supportive, providing practical support and assistance, as well as dropping by and sharing a laugh or two over a cuppa.
With characteristic optimism Lily is encouraging people to get together this month and organise tea parties with their pals, in order to raise some much needed funds to help IMNDA continue to support those living with the disease. “So here I am, raising the teacup with a small bit of hope and loads of love. Let’s all drink tea for MND.”
For details of how to get involved visit imnda.ie. Alternatively text MND to 50300 to donate €2. For more information about Lily’s gorgeous selection of award-winning leaf tea pyramids, personally selected loose-leaf, and Organic Trust certified Macha Teas see Lilystea.ie @lilysteashop
