Hi and Bye

Hi and Bye,



Just a quick update before we leave for Minnesota this Sunday…



Thank you for all your concern in regards to our Oakland trip. Due to circumstances beyond our control, we were not able to have Trey tested as scheduled. We were still awaiting the final two test results from Minnesota days before we were about to leave for Oakland . It was explained to us that there was some “construction” going on at the lab where Trey’s skin fibroblast was being grown and tested. As luck would have it some “dust” entered Trey’s sample and contaminated it. The people from Biomarin expressed their sympathy towards us for all that we have been through and that without the results from the final tests, they felt it was better that we reschedule our visit until all tests are back and we are 100% sure Trey has MPS IV (even without the final two test results, Dr. Whitley was 98% sure of Treys diagnosis). Dr. Whitley so kindly agreed to write the letter below in hopes of persuading Biomarin of Trey’s new diagnosis…to no avail L. Again, everything happens for a reason…we will see about making our visit to Oakland sometime after we return from Minnesota .



Michael Trey LANE has Morquio syndrome type A with 98% certainty.

This is based on:

1.) Elevated urine glycosaminoglycans.

2.) Deficient GALNS enzyme measured in blood in the laboratory of Dr.

George Hoganson, University of Illinois , Chicago .

3.) Oral report of characteristic and specific urine metabolite measured in the lab of Dr. Jerry Thompson.

4.) Lack of MPS VI gene mutation determined at Emory (hearsay from Genetic Counselor in Phoenix ; awaiting written report)



By most standards this should be sufficient, and this all correlates with his clinical condition. Because of past events, we are also ruling out multiple sulfatase deficiency (awaiting results of cultured fibroblasts from two labs), and are doing gene sequencing of the GALNS gene (exons 2-14 went on the sequencer in my lab today).

Warm regards,

Chester B Whitley PhD MD





A few days after we had conceded to not visiting Oakland , the conclusive test results (the email from my last update) came to us from Dr. Whitley…I was not about to “ruffle any feathers” … we will reschedule.



On to Minnesota …we are off again for more tests and more results. As instructed by the MN. doctors last November we are returning to Minnesota to have the curvature of Trey’s spine measured and to meet with Dr. Whitley regarding Trey’s new diagnosis as well as to discuss where we go from here. Out hesitation we have decided that Trey’s team of doctors will now be in Minnesota and from here on out, they will advise us on Trey’s medical care. While in Minnesota in addition to meeting with Dr. Whitley and Dr. Schwender (of the Twin City Spine Center ), we will also meet with an audiologist, an ENT, a pulmonologist and an endocrinologist (to conduct a “stim test” on Trey to determine if he can produce growth hormone). Once again our schedule will be busy but well worth getting the answers to.



Since November’s visit to MN. pertaining to the curvature of Trey’s spine and the possibility of Trey having to have spins surgery if the curve progresses, we have been very proactive. Trey has been going to physical therapy three days a week. Trey’s appointments consist of time in the pool, in the gym and even laser therapy. My prayer is that Trey’s spine x-ray will not only show no progression of the curve but possibly even show that the percentage has decreased…”hey, I will always pray for the best case scenario”. We are all so proud of Trey and all his hard work!



The attached pictures are of Trey at PT. The first picture is of Trey and his favorite person in the world these days, his therapist “Miss Dani”



God Bless,

The Lanes