THIS JUST IN>>>

Hello everyone,

THIS JUST IN>>> regarding Trey’s blood and Urine test’s. Mike and I aren’t too sure how to react just yet until we get all parties involved recommendations but so far so good…the prayers are working

At 4:30 am Minnesota time, we receive this email.

Cami,

I reviewed the material you sent, and am looking forward to seeing you and Trey as soon as Dr. Jerry Thompson has completed his studies. It would be important to be sure that he has ruled-out Hunter syndrome and multiple sulfatase deficiency, and that we are certain that Trey has Maroteaux-Lamy syndrome. I have no reason to doubt that this is true; however, since these studies have been started, let's be sure that the complete diagnostic studies have been completed before you travel to Minnesota . Once we have those studies, I would like to set up a week-long series of tests and consultations to resolve these issues. This would include consultations with my colleagues in Neurology, Neurosurgery, and other areas. I believe we have more experience with MPS conditions than any other location in the world, and can help sort out the unclear issues. After the initial out-patient tests, we would plan a series of tests under sedation/general anesthesia on Wednesday or Thursday. Let's get the results from Dr. Thompson, and then move forward quickly.

And to my surprise, this was received at 9:30 am Arizona time.

Trey’s geneticist wrote…

Cami:

I just spoke with Jerry Thompson at U of Alabama. Trey's findings remain consistent with MPS VI and not consistent with any other known MPS. Enzyme and urine testing for MPS II was negative. The urine pattern was not consistent with MPS III or IV.

The next piece we need is the GAG levels from Biomarin, which I will call on now.

I then forwarded this on the doctor in MN. to see what his take regarding our next visit to MN. will be now that we have the test results from Dr. Jerry Thompson. Since the forward, I have yet to hear back. As usual we will keep you posted.

Attached are photos of the boys from MN – they are so lucky to have their great grandmother living in MN about 4 hours from the hospital. The memories they made with her at her home on the lake are irreplaceable.


Thank you all for asking…we are taking it day by day.

God Bless,

The Lanes~Mike, Cami, Drake, Broc and Trey