May Fundraiser of the Month - Ethan Fanneran-Burley and family

Updated: May 13

For our 40th anniversary this year, we have decided to have a 'Fundraiser of the Month' throughout the year. This month, we have Katrina Fanneran-Mullins, Kevin Mullins and their three children - Ethan, who has MPSVI, and his younger siblings Kaitlyn and Cohen.


This 15th May marks the 10th anniversary of the family's Wear Blue Day event, started back in 2012 by Ethan's mum Katrina, when she and Ethan faced their first MPS Awareness Day after Ethan was diagnosed in July 2011. It was this first Wear Blue Day for Ethan event that inspired The MPS Society's annual 'Wear It Blue' campaign and has seen the family inspire thousands of people around the world to join them by wearing blue and posting photos to their Facebook event page in honour of Ethan and all those with MPS.

Blue is the charity colour for the MPS Society, as well as Ethan's favourite colour, and so it was an easy way for Katrina to help raise awareness for what would be her first International MPS Awareness Day as she and Ethan were in isolation after his first of many surgeries. Their annual awareness and fundraising event have generated support far and wide and has seen multiple celebrities, Sky Sports News presenters and last year, the Toronto Blue Jays in Canada join the family in their Wear Blue Day campaign.


Through their annual Wear Blue Day campaign, and along with numerous physical challenges that both Ethan and his stepdad Kevin have completed, the family have raised an incredible amount of money for us, all told, approximately £40,000.


Ethan was diagnosed with MPS VI, Maroteaux-Lamy Syndrome, shortly before his third birthday. Ethan, now 13 years old, is under the lifetime care of Great Ormond Street Hospital (GOSH) and has endured numerous surgeries, including lifesaving surgery on his cervical spine in 2017. He currently undergoes Enzyme Replacement Therapy weekly at home and continues to inspire all those who know him with his amazing can-do attitude.


He has represented the MPS community proudly for the past three years by completing, and more recently captaining some incredible celebrity sidekicks, at the Superhero Series events. These events have seen Ethan and his family featured on Channel 4, where Ethan had the opportunity to tell the world about his life LIVING with MPS and raise awareness for the entire MPS community.


In addition, Kevin has taken on several difficult challenges to support their fundraising efforts. In 2017 he and his friend, Davy O'Neill, completed the Coast to Coast challenge, a 308km hike from St. Bees in Cumbria on the west coast of England, to Robin Hood's Bay in North Yorkshire on the east coast, in just 12 days to represent each of the days Ethan spent in hospital after his cervical spine surgery. The following year, they completed the Isle of Wight Challenge with another friend, Adam Fairbrass, which was a continuous walk of 106km around the island. They started in the morning and walked throughout the night.


Last year, Ethan decided that he would like to complete his own challenge with his family, ahead of their 9th Wear Blue Day event, by walking/cycling 100km in the month leading up to 15th May 2021. 100km works out as 62 miles, which happens to be the exact distance between the family home in Kent and GOSH.


He hoped to raise funds and awareness for the incredible care he receives from all of his teams at GOSH, as well as for all people with MPS, who are supported by the MPS Society.


The family raised almost £6,000 which was split between GOSH and the MPS Society.


Inspired by Ethan's own 100 kilometre challenge leading up to Wear Blue Day, Kevin and his friends again took on their own 100km event. Kevin along with friend Adam and with the addition of Luis Dawber, undertook the South Coast Ultra Challenge in September 2021. They completed another continuous walk of 100km. Another gruelling challenge to help raise the profile for Ethan and all those who are affected by MPS and related diseases.


Kevin said: “We were motivated by Ethan’s incredible achievements, so we laced on our boots and tackled a more challenging terrain in the hope of securing donations for the incredible and thoroughly deserving MPS Society.”


St Stephen’s Golf Society helped them to launch their fundraising campaign and organised a Wear Blue charity golf day at Broome Park Golf Course in Kent in June – a month after Ethan completed his 100km challenge. It was a thoroughly successful and enjoyable day for all who attended. In total, they raised just under £2,000 for the MPS Society through this challenge with Ethan, Kaitlyn and Cohen running onto the 18th green when Kevin finished.


At the MPS Society, we’d like to say a huge thank you to this entire family for their ongoing support!


Written by Rhia Arden


More information:

If you are interested in donating to the MPS Society, please click here.