“Miles for Miles” is a global story of people from around the world gathering around an amazing little boy. His mother, Leah, tells us the story of her remarkable son, our extraordinary expat for July: Miles.
Miles springs through life like many 6-year-olds but is different in one very big way. Miles was diagnosed with Progeria, a fatal genetic disease which causes accelerated ageing. He is 1 of only 90 children in the whole world with Progeria and is the only child with Progeria in the whole of Sweden.
Children with progeria, who are born looking healthy, age faster than the average person. When they are six years old, it is as if their body is 60 years old. All children with progeria die of heart disease and/or a stroke at an average age of thirteen years. The intellect of children with progeria is unaffected, and despite the often startling physical features, they are just like any other little kid. While Miles may be a very small, thin boy with no hair and a distinctive face, he is full of energy and curiosity.
As part of a Swedish-American family Miles has lived in Italy, the USA, Senegal and Sweden in his 6 years. He speaks three languages, can read and write and loves exploring. His family is focused on providing him with a rich and interesting life. If it’s going to be a short one, let’s make it a full one!
“Miles for Miles” was created by a childhood friend of mine, Stephanie, who, as a mother herself, empathized with my son’s story. Stephanie organized a team to run the Pittsburgh Marathon in the USA in 2009 and under the “Miles for Miles” banner raised over $10,000 for the Progeria Research Foundation (PRF). The PRF was a driving force behind the discovery of the Progeria gene and has developed programs and services to aid those affected by Progeria. Currently the PRF is running drug trials to find a cure for the disease and Miles has been participating in the trial since 2009 with the hope that the medications will ease the disease and one day cure it. It is a very complex research event with daily medications and twice-annual trips to a hospital in Boston USA for extensive testing. All of the medications and clinical research are funded by the PRF, which is primarily supported by private fundraising such as this.
“Miles for Miles” has grown over the years and is now a dedicated brand to raising money through sports and other events to fund the medical trials and to make sure that Miles and other kids like him are given the best opportunity to stay as healthy as possible. After the original Pittsburgh marathon, there have also been “Miles for Miles” fundraising events in California in 2009, the Lidingöloppet in Stockholm in 2010, the New York City marathon in 2012 and the Cape Bike Marathon in South Africa in 2013. Presently the sixth “Miles for Miles” event will take place in Stockholm on September 7th 2013 with the Tjemilen in Stockholm. A team of four mothers will run to raise funds for the PRF and to build awareness in the Stockholm community about Miles and his disease:
The Tjejmilen ‘Miles for Miles’ team of Claudia Dahlgren, Michelle Ng-Eriksson, Anett Grusser-Pettersson, and Nina Wahlberg is a group of mums from Germany, Singapore and New Zealand formed through a family support group in Sweden. Aside from running the Tjejmilen itself, they have also been fundraising through selling items online and at various loppis in the city, including the Solvalla drive-in loppis on the 24th August and the Täby Galopp on the 31st. Nina’s husband, Henrik will also be supporting the ‘Miles for Miles’ team by participating in ‘one of the toughest endurance races in the world’, the ÖTILLÖ. The team states
Our motivations are purely to dedicate our running to Miles and raise awareness about Progeria. We want to bring forth the research surrounding cures and ways that the condition and symptoms associated with the condition may be slowed. We also care about our dear friend Leah, mother of Miles, and her aims to help people see Miles for who he is and to widen his supportive network. Our training and the ‘Tjejmilen’ run are symbolic of the journey that we are taking to help people understand.
Donations to show support for the Tjejmilen team and Miles can be made online via a secured payment site, where the funds go directly to the registered charity: The Progeria Research Foundation. Already around 25% of the 40,000kr goal has been met and there are still 2 months until the race. Beyond the fundraising, Miles’ father and myself are really excited to use these ‘Miles for Miles’ events to raise awareness about the disease and to profile what an amazing boy we have.
We hope that as Miles becomes more recognized around Stockholm we will be able to create a more caring and welcoming environment for him to spend his years in. We invite you all to come meet Miles and his family on the day of the race and thank you all for the compassion and support shown.
If you would like more information about progeria and the related research please visit the PRF website www.progeriaresearch.org.
If you would like more information about how you can help raise awareness or funds for progeria please contact Miles’ mother, Leah Richardson at [email protected].
If you would like to sponsor the Tjejmilen team, please visit http://www.firstgiving.com/fundraiser/MilesforMilesTjejmilen/milesformilestjejmilen
Article: Leah Richardson, mother of Miles