Wow! This has been an amazing year of updates!
We got word today that Christian has been approved to start infusions of Soliris immediately. With the confirmation that his retinal stroke back in August was a result of a recurrence of active HUS, Dr. S, was able to secure treatment with Soliris beginning in November.
The plan is weekly infusions at TCH for 5 weeks, beginning Nov 14th, then we will go to the standard "every two weeks" infusion schedule.
With this acceptance, Dr S will also begin to prepare Christian's case for submittal to the TCH medical review board for a kidney transplant.
What a year this has been... being able to see coming to fruition the hopes we have had for years - that there would be a miracle breakthrough in this terrible disease, discovery of it's causes and a therapy that can manage it and give Christian back a "normal" life.
We are right there on the cutting edge of all of this becoming reality. The feelings are too much to put into words.
Thanks for keeping up with us and take care.
Kiki's Dad
We got word today that Christian has been approved to start infusions of Soliris immediately. With the confirmation that his retinal stroke back in August was a result of a recurrence of active HUS, Dr. S, was able to secure treatment with Soliris beginning in November.
The plan is weekly infusions at TCH for 5 weeks, beginning Nov 14th, then we will go to the standard "every two weeks" infusion schedule.
With this acceptance, Dr S will also begin to prepare Christian's case for submittal to the TCH medical review board for a kidney transplant.
What a year this has been... being able to see coming to fruition the hopes we have had for years - that there would be a miracle breakthrough in this terrible disease, discovery of it's causes and a therapy that can manage it and give Christian back a "normal" life.
We are right there on the cutting edge of all of this becoming reality. The feelings are too much to put into words.
Thanks for keeping up with us and take care.
Kiki's Dad
