Devin's update

[Paula Blanchard Lamigo]

I know I don't post on here very often, but I thought I would let you know what's been going on in our world. I have been working to get Devin into the pediatric clinical trial of Soliris, pretty much since I heard it was going to happen. Well, tonight I checked my personal email & both the physicians at Driscoll in Corpus Christi sent me a message to contact them as soon as possible. Our nephrologist, Dr. Kher, had already filled out some paperwork and releases and sent them on to them. The main physician is in a class all day today & until late Friday afternoon, but he gave me his cell number to call him to discuss Devin's information. I called my hubby (who happens to be in Korea for work) and let him know.

Anyway, you can bet I'll be on the phone tomorrow with Devin's doctor to get any necessary information that they might want. I plan on calling him as soon as he is out of his course on Friday! I hope this is the start of something good for Devin. He is currently doing really well and still has almost 100% of his kidney function after two complete renal failures. So, this is really exciting for us since he has a Factor H-related defect. We would love to see how Soliris can work for him and help him to keep his kidneys since they are still functioning rather well. I'll try to keep you updated on what happens with this.

Paula Lamigo

[Paula Blanchard Lamigo]

It's from a combo of his hematocrit, hemoglobin, & his LDH (mostly his LDH).

[Amy Swarbrick]

I hope everything works out for Devin and he can easily get into the trial. I was wondering how you know that Devin is always in a low state of hemolysis? Brody as well has a factor H mutation and currently has 100% of his kidney function. We do lab tests every 3 months now and had a C5 assay last time we went in (which the doc said was in normal ranges). Are they getting this from his LDH? Just wondering because I always just assumed Brody was in "remission" since he wasn't needing plasma infusions. Thanks and good luck!

[Paula Blanchard Lamigo]

I have heard that through the grapevine as well. I know that Devin, like Chloe, is in a constant state of low level hemolysis. I don't know the % rate of that, as I never asked. When I discussed the study with Dr. Kher, I specifically did not mention the "grapevine talk" in order to not possibly bring up a roadblock that might be an unnecessary one to mention. However, Dr. Kher has been in contact with the physicians in Atlanta (where the other two trials were/are & now with the team in Corpus & has released all of Devin's records to them), so I guess I will just have to wait until I speak to the doctor tonight to hear what he has to say.

I know that Dr. Kher has gone over Devin's history with them, so I'm not sure if this will become a roadblock or not. I do think however, that since Devin is not technically ever in a state of "remission" or whatever you want to call it, might actually be not a negative thing. If the study can monitor whether or not the use of Soliris can stop his & Chloe's low level constant state of hemolysis~I think that would be beneficial to Alexion's findings. Not sure how this will play out, but at least I am finally getting some answers & returned calls, whatever the outcome may be!

[Cheryl Biermann]

Paula, that would be wonderful!