Not heard of Fraser Syndrome before? Then you wouldn’t be alone. Fraser Syndrome is an extremely rare, recessive gene disorder that affects only around 250 of the 7.7 billion people in the world. Fraser Syndrome, in many cases, can be life-limiting and it comes with severe symptoms: the most common being the fusion of the skin between the fingers and toes; blindness and fusion of the eyelids as well as abnormalities of the urinary and airway tracts. However, as Fraser Syndrome is so rare, doctors are still learning the exact effects of this disability.
With such significant challenges facing those with Fraser Syndrome, Stride Underwriting would like to congratulate staff member Hannah Down on overcoming these obstacles as she has thrived since joining the team.
Hannah joined Stride Underwriting in August 2018 on an apprenticeship as a Data Entry Clerk.
Despite the struggles she has faced, and continues to face with Fraser Syndrome, Hannah does not let anything stand in the way of having her independence and making a life for herself. Since school, Hannah has always wanted to work in business administration and through hard work and determination that is exactly what she is now doing.
Starting with Stride Underwriting as a somewhat nervous 18 year old, Hannah’s colleagues have seen her confidence rocket and she has become a real asset to the team. Speaking about her time at Stride, Hannah commented: ‘I love the social side of my job and getting to know the team, I am mixing with people who I wouldn’t normally mix with and I now feel really comfortable here.’
Wanting to unite the small number of people who suffer from Fraser Syndrome, Kyle Anne Grendys, a young American film student and the 75th person identified as born with this rare disorder, set out on a journey to finally meet others just like her. When Kyle was born, doctors told her parents that she wouldn’t survive the night; twenty-six years later she is proving everyone wrong. Kyle wanted to document her story and raise awareness, as well as find her community and share hope for others which led her to produce the film, ‘Fraser Syndrome & Me’. This inspiring film won best documentary at Southampton International Film Festival this year, as well as numerous other awards across the globe.
Kyle’s short film will introduce you to seven people, including Hannah, with a disorder that you almost certainly have never heard of until now. The film will give you an insight into their lives and the struggles that those with Fraser Syndrome face. However, you’ll also see so much more, and will no doubt come away feeling inspired by these truly resilient people who have so much to give society.
Speaking about her involvement in the film, Hannah explains: ‘You do get stares and you do get people making judgements but this film shows that we are still people and we can still live our lives, we just have to get on with it. My favourite part of the film was being able to express myself and talk to people without it feeling awkward as they have been through what I have. It’s just nice to meet other people who have Fraser Syndrome and be able to share my story with them and to show people I am just as much of a person as they are.’
Proving that you don’t have to hide away from a disability, Hannah says that working at Stride has given her self-confidence and the belief that she can achieve anything she wants to in life. Although Hannah has lost count of the number of surgical procedures she has had in her lifetime, she inspirationally states that, ‘Everyone has something they have to overcome in life, it’s just how you overcome it and how you deal with it – sometimes you just have to get on with it.’
We shall see a lot more from, not only Hannah, but also from all those who suffer from Fraser Syndrome. While there are still many unknowns surrounding this disability, what is clear to see is how strong and determined these individuals are and that they will not let Fraser Syndrome define them.