The Trip:It is estimated that 1 in 25,000 births in this country will result in some form of an MPS disorder. Due to the small number and the rare nature of the conditions very few people are aware of them and how devastating they can be.
Faces of MPS
The documentary will show how different MPS families in the USA have been affected by the disorders. This will be achieved by spending every other day, while on the trip, with a different family that has been affected by an MPS disorder. While staying with the families I will be recording key moments in every day normal life in an effort to create insight into their lives. To gain further insight I will be conducting interviews with different members of the family units (i.e. Mother, Father, Sister, Brother, as well as the family member with the condition). The purpose of these interviews will be to give a 360 degree perspective on how severe genetic disorders impact every little aspect of family life and not just the life of the individual that has the condition.
This project is only one part of a campaign launched by myself to raise awareness of MPS disorders across the country. Leading up to and during this trip I will be reaching out to different colleges, hospitals and universities in order to conduct speaking engagements at those locations. This is being done in an effort to not only raise the awareness of MPS disorders but also raise the level of acceptance/understanding of individuals with disabilities. Along the way it is my hope to raise the interest of mainstream media and be able to speak with local TV and Radio personalities. I will also be conducting this campaign online, through the use of several social media outlets (twitter, Facebook, youtube, and others).
The goal of this campaign is not only to inform the public about MPS disorders but to also increase our countries acceptance of the disabled. It is my hope that through all of this I will be able to help families and individuals with MPS to see that they are not alone and that these disorders,although severe, does not mean a child will be unable to have a happy and meaningful life.
The faces of some of those that have passed away:
What is a MPS Disorder:
MPS and related diseases are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials. There are 6 different disorders that fall under the MPS category. In total it is estimated that 1 in 25,000 births in the United States that results in one of the 6 disorders.
What this project means to me:
When I was 6 years old I was diagnosed with a rare and life threatening disorder. I have fortunately lived past the 18 years I was told I had. But growing up I always felt that I was stuck between two worlds. The "Normal" world and the "Disabled" world. Most of my life I spent trying to ignore my disorder (although that is hard when your only 4'4") and be a normal person. But I never felt normal and I aways thought there was something missing. That is until this past summer when I decided to stop running from what I was and to start embracing it. Many of the individuals with MPS conditions are not as lucky as I am. Many die as kids and the majority of the ones that survive never fully mentally develop. So I feel that is my job to use the skills and knowledge I have obtained over the years to become their voice. Since many cannot speak for themselves I will speak on their behalf. I will teach the country what these disorders are and show people that we are no less important than a "regular" person. So this documentary and campaign is just the beginning of my life mission. It is as close to my heart as anything can be. I think of it as not just doing it for myself but Im doing this for all of those children that never had the chance to grow up!!!
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