big news is cause for BIG prayer for BIG TIME guidance.

so lilly has been asked to participate in a CF clinical study for a drug therapy.

This drug is possibly the breakthrough treatment we have been praying for and many CF patients have also been praying for for generations.  the goal of the drug is to fix the basic defect at the cellular level and in essence would allow the body to function correctly.  this would be HUGE news for the CF community because it would essentially allow CF to be a "livable" disease instead of a "life shortening" disease (35-38 current average survival rate).

the drug has made it through several successful phase studies and has just completed it drug study on adult patients.  now it is time for the study to be done on children that are CF patients.

so prayer is needed in a few areas:

#1- whether or not we choose to participate in the study.  lilly would be ONE of only THIRTY 6-11 year old kids in the entire nation participating in this phase of the study.  this makes her participation important and also a little scary.  any drug obviously requires testing but also contains risks. which is prayer request #2:

#2- that participating in it would not cause any harm to her system as it stands.  a general blanket of protection over her as she would willing be succumbing to  drug testing that would affect the way her cells would work thus the way her body currently functions.

#3- strength for mindy and lilly as it would be a 46 week study that would require some clinical visits... some lasting up to 8 hours.

#4- and IF we go forward in the study, that it would, in fact, work.

we will keep the community updated through the blog on what happens from here.  we are planning on submitting the paperwork to at least register for participation for now with the choice to withdraw in the future if we decided to.  thank you for your continued prayer and support as we make an exciting and equally scary decision.

remember lillydrive shirts go on sale in a few days.  let me know asap if you want one as each purchase is a $4 donation to the foundation.  (shirts are $10)

love wins,

lane, mindy, lilly, & wills