The city’s famed football club engages, inspires, and empowers this FSHD family
Last month, father and daughter Michael and Alexa Penwell had an incredible experience in Leicester City, England. They flew all the way from North Carolina to watch a Premier League football (soccer) match between Leicester City and the Wolverhampton Wanderers, but they had no idea what was in store for them. “Little did we know it when we planned our trip to their match that they were having their first-ever Disability Matters matchday,” said Michael.
Alexa, 23, who was diagnosed with FSHD at age 13 and whose twin sister has also been diagnosed, is a huge Premier League fan like her dad. Alexa and Michael had a visit to King Power Stadium on their travel wish list for years. By chance, the Leicester City Football Club Disability Support Association had exclusive activities planned to promote accessibility on the day that Alexa and Michael came to support the Foxes. A booth at the team store provided supporters with information about accessibility, and there were pre-match photo ops with the team and several opportunities for children with disabilities to interact with the players.
When the LCFC Disability Support Association learned that Michael and Alexa were traveling from the US to attend the match, they asked if they could follow the father-daughter duo around for the day to capture their experiences for use as part of their program. Michael and Alexa weren’t sure what to expect, but the results were fantastic.
Not only did they produce a wonderful video of Alexa sharing her FSHD story, but Alexa and Michael also had several unforgettable moments at the stadium. They met the manager and staff, one of whom is a former player that they loved to watch. “I tried not to fangirl,” Alexa said about the meet and greet, trying not to seem too starstruck. They also visited areas of the stadium that are off-limits to the public on match day, and finally, had seats right next to the bench with an incredible view.
This was a once-in-a-lifetime experience, as Michael and Alexa were able to watch the Foxes get the win while also being part of a movement to promote accessibility for people with disabilities. Alexa commented, “Everything from the store having the automatic doors makes it a lot easier… and what I really like about it is, I’m fortunate enough to have him (Michael) here as my caregiver, but I feel like I could do everything alone.” Leicester’s stadium is particularly accessible and sets a standard that other facilities should aim to match.
You can see the finished video that documents Alexa and Michael’s experience below. NBC Sports also ran this as a segment as part of their US coverage of Leicester City’s match vs. Everton on May 1st, so you may have caught it on television, even if you’re stateside.
The Penwell family has been an integral part of the North Carolina Chapter of the FSHD Society. They continue to show remarkable support through events like the Walk & Roll and attending last year’s Connect Conference in Orlando. Through their support and by sharing their experiences, they are helping to increase awareness of FSHD and educate others about the importance of accessibility for all.