y leaving the country and leaving the treatment they are receiving means in some cases those patients will die. isabel russo was invited to the united states from guatemala for a rare drug trial that saved her life. she graduated from college, winning awards for advocacy for people with rare disorders. this week isabel russo undergoes treatment that she can t get in guatemala. her doctors say without that treatment, it may only be a matter of months before she dies. at this point, my position would be if she stops enzyme, she ll rapidly move into that category of disease level, and whether it s months or one to two years, you re really handing her a death sentence.
rapidly move into that category of disease level, and whether it s months or one to two years, you re really handing her a death sentence. it s as if we re pulling the-plug on a respirator or stopping feedings for a patient that needs that type of support, and i think we you know, have really devastated this family, so, you know, we couldn t do these trials. the families are unbelievable in their willingness to move from around the world to a site that s experienced in these very sophisticated trials. they relocate, they live one to two years at the home site and sometimes the option to go back to the home country does not materialize, the countries can t offer the therapies and as you
of disease level, and whether it s months or one to two years, you re really handing her a death sentence. it s as if we re pulling the plug on a respirator or stopping feedings for a patient that needs that type of support, and i think we you know, have really devastated this family, so, you know, we couldn t do these trials. the families are unbelievable in their willingness to move from around the world to a site that s experienced in these very sophisticated trials. they relocate, they live one to two years at the home site and sometimes the option to go back to the home country does not materialize, the countries can t offer the therapies and as you