Amber Olsen hard to find a free moment. The average day for this mother, means the work as the owner of a private recruitment Agency Nextaff Gulf Coast, taking care of 2 teenage daughters and the search for a cure for the younger daughter willow, which is found rare genetic disorder.
Willow, who is now 6 years old, was diagnosed with multiple sulfatase failure and it is expected that the willow will not live up to 10 years.
Olsen dedicated himself to finding a cure for this life-threatening disease, even if not in order to save his daughter, in order to give a chance to other families.
Willow was born on August 21, 2013 after a healthy pregnancy. She was born a happy girl who loved to get kisses from older sisters and parents. Amber (she is now 44 years old) soon noticed that the girl was a little behind in development because they cannot learn to crawl and start walking. “It materinski instinct. She almost learned to walk and run, but he did it like Frankenstein… her hands were splayed and not moving”. The girl was taken to a neurologist, where the family learned that the child shows signs of regression, and finally, she lost the ability to walk and move with the exception of the hands. After testing, the family learned that she had multiple sulfatase failure, in which the body is unable to rid the cell of waste. The disease most affects the brain.
When the doctors told the mother the diagnosis, they noted that there was no cure. “Nothing can be done, just take her home and stay with her, to make her life as comfortable as possible, and she will die”, said Olsen.
It is estimated that in USA there are 50-75 of children with this disease. At the moment children’s hospital Children’s Hospital of Philadelphia is trying to find every child with this disease to study disease because it is incredibly rare disease and it is also pretty uniform manifests itself in different children.
Soon after diagnosis, willow went back to crawling and reached the point where she could not move. She can’t talk, but her parents are sure that the girl understands everything.
When mother got the diagnosis, she decided not to sit and wait for her daughter’s life will fade. If nobody knows the cure, she will find it herself. She immediately started looking for other parents who had children with the same condition and started to raise funds for research of the disease. The purpose she founded the organization United MSD Foundation was to raise $3 million for preclinical studies, the production of drugs against the disease and the first phase of the clinical trial. With the help of scientists and volunteers of the organization, amber has collected more than $2 million over 2 years she left to raise $620 thousand, to reach the goal.
The mother believes that if you can not save her daughter, at least she will have the opportunity to save the lives of other children.
“We all have the opportunity to grow, learn, marry, and have children to leave a trace of themselves, and she doesn’t… many of these possibilities. I think it’s so important… you know, her legacy”.