Bravery award is a ‘huge boost’ for siblings Mary-Kate and Ben Tierney
Two Derry children who have a rare chronic and progressive condition are to receive official recognition from a global organisation for their courage.
Mary-Kate and Ben Tierney suffer from a rare form of Lymphoedema and have to wear compression garments 24 hours a day to manage a build up of fluid in their legs.
They have each received an award in advance of the official ceremony this weekend from the Lymphatic Education & Research Network (LE&RN) and their acceptance speech at the virtual event will be introduced by the star of Police Academy Steve Guttenberg.
Screen legend Kathy Bates, who has secondary Lymphoedema and is an ambassador for LE&RN, will also be chatting about the Derry youngsters and their bravery when she appears on The Late, Late Show with Ryan Tubridy tonight.
Mary-Kate was diagnosed with the incredibly rare form of Lymphoedema Milroy’s Disease when she was eight months old, while Ben was diagnosed shortly after birth.
The children, their parents Cheryl and Brian (who is Mayor of Derry & Strabane) and the rest of the family have been raising awareness about Lymphoedema for a number of years and nine-year-old Mary-Kate launched a YouTube channel last year to show people what every day life is like for her and her seven-year-old brother.
Mum Cheryl said that initially she was unsure about allowing her daughter to set up the channel, but it has provided a much needed boost to her confidence.
“Mary-Kate hit a brick wall about a year and a half ago when she realised that she was different. As a mammy, I thought that would come when she was a teenager, not when she was seven or eight.
“Nothing prepares you for that and it knocked me for six,” Cheryl said. “Mary-Kate always wore the brightest compression stockings and was always showing them off, but she went back to wearing skin coloured ones. She always asked to set up a YouTube channel to raise more awareness.
“I was worried about her putting herself out there, but as she got more mature we decided to let her do it. The difference in her overnight was amazing, she got so much confidence back as a result.”
The family had always been involved with LE&RN, sharing information and support where possible.
“Out of nowhere they got in touch with us about the courage award. They are based in America, but are a global organisation. Every year they do an awareness day and do a lymph walk or run to raise funds for their work. This year the organisation has taken the opportunity of the pandemic to do a virtual walk and award ceremony and to take it global. They said they wanted to give Mary-Kate and Ben an award to honour their bravery after watching their social media.”
While Mary-Kate and Ben were born with Lymphoedema, other children may not develop the condition until they are in their teens. It is also a common condition in cancer patients who have had lymph nodes removed.
Cheryl said it is important to her children and family to continue to raise awareness of Lymphoedema so services can be developed and increased.
Mary-Kate and Ben require daily physical therapy and they have periods when their condition is worse.
“They have been impacted by covid,” Cheryl said. “Just the lack of movement and not being at school, it has all had a big impact. Some days they can walk and other days they have to use wheelchairs, but that is just the nature of the condition.”
She said that the award has given Mary-Kate and Ben ‘such a boost’ and their family are ‘immensely proud’ of them. “They are so delighted. To them this is their daily life, they don’t think they’re brave,” Cheryl said. “I don’t think I could cope as well as they do. Of course they have their off days and their down days, that is part of living with a long term condition, but they just get up and batter on.
“Nothing holds them back and I never want them to lose that. It is just so nice that someone else has said they can see that in them and that they want to honour them.”
To watch and subscribe to Mary-Kate and Ben’s YouTube channel Lymphoedema Life visit https://youtube.com/channel/UCMxKvfxnpl90PfZ-eckUt4A