prevented all children under the age of 12 from receiving priority in the adult pool of patients waiting for transplants. lung donations from children are rare, but children can use a nodified lung from an adult and since there are more lung donations from adults, the murnaghans say what should happen now is clear. >> the system needs to be changed. it needs to be fair for everyone, for adults and for children. i don't want sarah in front of anyone who is sicker. this should be the sickest person first. >> reporter: javier's family knows the pain of waiting all too well. in 2009 his brother, who also had cystic fibrosis, died while waiting for a transplant. the murnaghans initiated the lawsuit against hhs and secretary kathleen sebelius urging her to change the so-called under 12 rule. sebelius was questioned about it during a budget hearing. >> the worst of all worlds in my mind is to have some individual pick and choose who lives and who dies. i think you want a process where