Dear Epaphras,
Agios pharmaceutical has been working on a cure for Julia’s disease and they are just now beginning their clinical trials. As part of their role-out they have invited a handful of PKD patients and parents of patients to join a european advisory board and attend a weekend conference in London. Sara, is there as I write. She is finally meeting people we’ve known (virtually) for 10 years. We are excited that Agios has been developing this cure. And, while it might not be available for 5-10 years, there is hope on the horizon. I asked Sara how we could pray for her this weekend. It promises to be a very emotional time as patients and families share how they have lived this disease for many, many years. Sara asked for prayer that she would have many opportunities to share Jesus and the hope He gives while suffering in this world and our hope in the next.
While a cure is on the horizon, there are still aspects of Julia’s disease that we need to manage this side of a cure. We were reminded of that this Wednesday. She has been transfusion free since her splenectomy in January 2012, which we consider a gift from the Lord. However, Wednesday, during a routine yearly visit to her GI doctor in Toulouse, it was determined that her bile duct was still dilating (you’ll recall that was a possibility a few years ago) and he thinks its time to undergo a fairly invasive bile duct reconstruction surgery. We will have an MRI in the coming weeks to confirm this. Please ask the Lord to use this in Julia’s life that we might all be drawn closer to Him. And, of course pray for miraculous healing.
In Sara’s absence, I am preaching this weekend and would appreciate your prayers that God would work through me as I proclaim His Word. I’ll be speaking on Philippians 3: 10,11 gaining perspective and encouragement from the attitude Paul had about eternity, suffering and joy.
Blessings in Jesus,
Steve
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