After adapting with her daughter’s disease for 13 years, Jen O’Connor as a rare diseases supporter, required the government to protect them. Her 18 years old daughter, Sydney, could not talk and walk during these years but now through a correct diagnosis and treatment, she enables to run and talk. Her mother’s attention caused the detection of this disease’s mystery which caused the diagnosis of 300 cases similar to her girl.
Sydney has come down with Mowat-Wilson Syndrome which is not an inherited disease and affects parts of the body. This disease is contain intellectual disability, epilepsy, Hirschprung disease, bowel colon disorder and birth defect.
Jen O’Connor has already been a volunteer as an ambassador of NORD in Michigan which is a part of Rare Action Network. She said there are 7000 rare diseases in USA and their group advocates rare patients. She noted that should increase the awareness and expand notices in this field. In every 10 person there is a rare patient. This number has reached to 1 million in Michigan.
She showed her dissatisfaction for rare patients’ schools from others and said the separate schools will cause separate societies. ‘’ if you look at the parks you will see several obstacles. The question is where a person who use wheelchair should go exactly? That is because nobody has never protested yet.’’ She added. Their group tries in the case of doctors, professionals, disease diagnosis and school insulation.
She hopes to get other people with rare diseases, as well as their advocates and family members to lead to public awareness eventually. ‘’ Social Medias gave my daughter and I big services and they are the diagnosis reason and the biggest supporter for our group. If we don’t get together and make one big rare diseases council, helping people affected with rare diseases as individuals is going to be pointless.’’ She said.
At the end, she read a quate from NORD,” we are rare alone, but we are strong together.”