They are like movie stars to me...

Hi all,

Double click on the link below…this excites me to no end! It is so interesting how they are just about to open a trial on GHT (just what I was talking about for Trey) although it looks like you have to be at least 5 years old. Also take note of where this is all taking place…The UNIVERSITY OF MINNESOTA!!! I am so anxious to meet all these specialists for Trey, they are like movie stars to me

Love,

Cami

Sent: Thursday, October 23, 2008 10:25 PM
To: Mike & Cami
Subject: Re: UPDATE #8

Hi Cami,

I searched on line and found the following site:

CLICK HERE


Sherri

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

SILPADA PARTY FUNDRAISER

THIS PAST WEEKEND MY SISTER-IN LAW, MIKE’S SISTER, AUNTIE CATHY, AND THE BEST AUNT IN THE WORLD WITH THE UNTIRING HELP OF OUR BROTHER IN LAW, BRYAN AKA TREY’S FAVORITE PERSON, HELD A SILPADA JEWERLY FUNDRAISER. THIS EVENT WAS SUCH A WORK OF “HEART” AND WAS PUT TOGETHER BEAUTIFULLY! TREY WAS MY SATURDAY NIGHT DATE FOR THE PARTY. THE LADIES FELL IN LOVE WITH MY LITTLE BLONDE HAIRED BLUE EYED ANGEL…GO FIGURE J HE WAS SO EXCITED TO SEE HIS AUNTIE AND UNCLE AND HAD A BLAST BEING THE CENTER OF ATTENTION AND EATING SWEETS AND TREATS UNTIL HIS LITTLE HEART WAS CONTENT. WE LOVE YOU TWO DEARLY AND CAN’T EVEN BEGIN TO THANK YOU FOR EVERYTHING ELSE YOU DO ON TOP OF THIS FUNDRAISER…AS IF THAT WASN’T ENOUGH ALREADY.
WE ALL LOVE YOU MUCHO MUCH!!!!
CAMI AND THE BOYS

The invite read:

You are invited to the greatest fundraiser of the year!!

The Silpada Party Fundraiser will benefit Michael Trey Lane . Trey is a 3-year old little boy who was recently diagnosed with MSP VI, an extremely rare and life threatening genetic disorder. The proceeds raised at the fund raiser will go to Trey’s Treasures trust fund which will be used for Trey’s medical expenses and to support research for a cure.

In addition to Silpada’s high-quality .925 sterling silver and gemstone jewelry display, Hors d’oeuvres and cocktails will be served in addition to prize raffles and a 50/50 drawing. This will be a FUN event and . . . you will be taking care of Trey! He is absolutely adorable. We hope that he will be able to make an appearance at the fund raiser.

Mini Pumpkins for a Mega Cause

Upon returning home for Minnesota , this email was passed on to us from the editor at the news paper with the subject line reading: Something I thought you should know about. The sale took place on the Sunday we returned home so we thought we had missed it. To our surprise, the sale was so successful, the mom’s group decided to sell the pumpkins the following weekend. Mike the kids and I showed up at the church this past Sunday to personally thank these generous ladies. What a wonderful gesture we were so honored to be recipients of. A huge THANK YOU to Phyllis, Anne and the rest of the mom’s group of Risen Savior.

The article read: The mom's group at Risen Savior Lutheran Church is sponsoring a pumpkin sale to raise money for a Chandler toddler Sunday. All money raised in the sale, dubbed "Mini Pumpkin for Mega Cause," will be donated to 3-year-old Trey Lane 's medical fund. Trey has a rare genetic disorder called mucopolysaccharidosis VI, or MPS VI, that makes it difficult for his body to rebuild bone and tissue. Though mothers in the church group do not know the Lane family, they felt called to help after reading a recent Republic story about Trey's condition. The group plans to charge $3 a pumpkin and will accept additional contributions.

Trey's Takedown against MPS 6