Update

Hi Everyone,

Another very busy week as I imagine will be the next and the next and the next...our life as we knew it will never be the same. This e-mail is sent for so many reasons but the first to let you all know that Trey will undergo surgery, Monday Feb.4th and to pray a little deeper for our sweet baby boy. The surgeon will fix his inguinal hernia as well as insert the port-a-cath into Trey's chest region so as to access him for his weekly infusions. During the time that he is sedated, he will also have another MRI run on him. This MRI has been ordered by the pediatric neurologist as he would like it to include the brain, the neck and the entire spine whereas the previous MRI, done almost a year ago, focused strictly on his spine. We were advised to have all three procedures preformed on Trey all at once as it is recommended that MPS patients undergo anesthesia a little as possible. This leads me to the sleep study. Many of you had asked, "why a sleep study?" The reason for the sleep study is they were evaluating Trey's airway. Most MPS kids have very large tonsils and a narrow windpipe and sleep apnea is a serious health issue. Trey passed his sleep study with flying colors, no issues to report. As you can imagine this news makes Mike and I so happy, for more than one reason - one more thing checked off our list of things to worry about and a better chance of him not having issues with the anesthesia this next Monday.

We finally got Trey's medical account opened and our very first deposit was so graciously given to us from Mike's work - The Tempe Officers Association (see attached picture of Trey - I think he knows as well as I do that this money is going to be the start of something big, just look at that smile!) The second deposit came from the money we made along with the money that our family and friends made and gave to us from our garage sale this weekend (see attached pictures). Words just can not express our gratitude - Thank you all!

I am so touched that so many of you have asked for other ways to help. As I stated, we have finally got Trey's medical fund bank account established and a paypal account to process the donations through. If you would like to make a donation directly to his account where 100% of the money goes to the medical bills, double click on the link on the right side of this page under Michael Trey Lane's Medical Fund. I can only think of so many ways to thank you all but the best I know of is just simply, THANK YOU! Thank you from the bottom of my heart!I've also been told that deposits can be made directly by going into any "Arizona Bank and Trust" to Michael Trey Lane's account, or by sending a check made payable to Michael Trey Lane, Arizona Bank and Trust, 4117 South Gilbert Road, Gilbert, AZ 85296.

Another great way to help is through the book fundraiser that is going on until 1/31/08 - only a few days left. If you are interested in ordering childrens books, 25% of all the money earned will be donated by my friend Margo back to Trey. ***If you go to Margo's website www.readforawareness.com you will see my name (Cami) listed under the title eshows.***

And yes, the Golf Tournament is on! It will take place at Western Skies Golf Course, Gilbert, AZ on Sunday, April 27th, details to follow...please save the date!

I am so excited to share this article with you. This was passed along to me by Isaac's parents. Ellen and Andrew live in Canada where 100% of their medical expenses are paid for by their health system. As I stated in one of my last e-mails, they started a non-profit organization where 100% of the money they receive go towards the funding for developing innovative treatments and finding cures for MPS VI patients. This is the latest on how their efforts are paying off. How can I not have faith and hope after reading such an article?

New Therapeutic Strategies for MPS VI

Calogera M. Simonaro, PhD

Lay Summary

The past decade has witnessed remarkable advances in the understanding and treatment of MPS VI. However, despite these advances, major challenges remain. For example, although enzyme replacement therapy (ERT) has recently become available for this disorder, it is extremely expensive and requires life-long infusions of recombinant enzyme. ERT also has very limited effects on the bones and joints, major sites of disease in MPS VI patients. Our laboratory has been using MPS VI animal models to study the mechanism of disease in bones and joints, as well as to evaluate new approaches to treatment. This research has led to a better understanding of the specific changes that occur in these tissues, facilitating the future design of more effective therapies. In the current proposal we will extend these findings and pursue two aims. In the first we will obtain fluid from the joints of MPS VI animals and patients, and measure the levels of several proteins we know are abnormal in MPS VI individuals. We will determine these levels as a function of age, and evaluate whether they can be used to predict the severity of disease and/or the outcome of treatment (i.e., biomarkers). In the second aim we will use MPS VI rats to evaluate the effects of two clinically available "anti-inflammatory" medications on the progression of disease, as well as one experimental medication that targets a pathway we have found abnormal in MPS VI cells. If we obtain evidence in the rats that such therapies are effective, these approaches could be easily evaluated in MPS VI patients, alone or as an adjunct to ERT.

PI: Calogera M. Simonaro, PhD

Associate Professor, Department of Genetics & Genomic Sciences

Mount Sinai School of Medicine

1425 Madison Avenue

New York, NY; 10029

...and on another note, this article was given to me from the gentleman at Arizona Bank with whom we opened Trey's account. He had asked me why the golf tournament and I recited Mark Dant's story, the next thing I knew he gave me this article that he had just read about families like ours...what a coincidence (see Mark's name towards the bottom)!

HOW TO SAVE YOUR OWN CHILD

NEEDHAM, Massachusetts (CNN) -- Early one summer's evening, five parents gathered at a suburban Boston home. They had wine and fruit tarts, cheese, crackers, and fresh fruit. Laughter and hugs filled the room.

But this is one gathering to which you don't want to be invited.

These parents have children with brain tumors. Frustrated with the lack of treatment options for kids, they meet once a month to come up with ways to fund medical research. So far, with no training in fundraising, this band of parents has raised more than $6 million in three years.

"Never underestimate the power of a parent with a sick kid," says one of the parents, Risa Sherman, whose 3-year-old daughter, Lucy Katcher, has a type of brain tumor called Juvenile Pilocytic Astrocytoma, or JPA.

Groups of parents like this one in Massachusetts -- parents shocked and even disgusted at how little money is being spent on their children's diseases -- are popping up in various parts of the country. Rather than wait for drug companies to do it, they're funding the research themselves.

When John Ragnoni's son, TJ, was diagnosed with JPA, "we thought the medical cavalry was on the way," he says. "We thought there must be just tons of research happening, that certainly there must be some cures or at least treatments for TJ."

But Ragnoni says he was "shocked" by the limited amounts of research being done on JPA, which strikes about 600 children each year. "We kept running into dead ends," he says.

That's when he and other parents started www.fightjpa.org, organizing bike rides, runs, and other events.

It's a problem with many rare diseases. Developing drugs for high blood pressure, high cholesterol, or depression, is lucrative because millions have those diseases. But when patients are counted in the thousands -- or even hundreds -- it's a different story.

Take neuroblastoma, a rare pediatric cancer. There are only 700 new cases a year in the US, according to Dr. Nai-Kong Cheung, a pediatric oncologist at Memorial Sloan-Kettering Cancer Center in New York City. He's developing a treatment that would be used by only about three or four hundred children a year.

"The industry doesn't think they're going to make money on these diseases, and they're right," Cheung says. "You have to answer to shareholders and everyone would say, 'Why are you investing in something that's not going to make money?'"

A few months ago, a group of parents asked Cheung what they could do to help further his research. "Do you have an extra 2-or 3-million dollars?" he asked them.

Gretchen Witt was listening. Her 3-year-old son, Liam, had just been diagnosed with a neuroblastoma. "I thought he was going to say $25 or $30 million. Two to 3 million is a drop in the bucket!," she says. "I thought, the only thing separating our children from having better odds and really horrible odds is just 2- to 3-million dollars?"

Then Witt saw a story on CNN about a family who raised $3 million through golf tournaments to fund a treatment for their son's rare genetic disorder. Initially told he wouldn't live past his 10th birthday, Ryan Dant graduated from high school in May.

"Golf tournaments is what I believe saved Ryan's life," says his father, Mark Dant.

But Witt knew golf tournaments wouldn't save Liam. "I don't like golf. I don't know anything about golf," she says."I think golf's a silly game."

So Witt thought long and hard about what she could do to raise money for Cheung's research. Then it came to her: As the public relations executive for a kitchen supply company, she did know people in the culinary world.

Working in three shifts, hundreds of volunteers -- from firefighters to stars of the "Food Network" -- baked 96,000 cookies in two weeks. "They totally had fun under very trying circumstances," Witt says. "For a while we didn't have heat in the kitchen to the point where you could see your breath. Nobody complained. Everybody kept focusing on the ultimate goal." Watch one mom's cookie crusade to help her child »

The ultimate goal was to raise enough money to pay a biotech firm to improve a treatment currently used to fight neuroblastomas. Witt says in the past few months, she knows six children who've died because the current treatment, which is working for her son, didn't work for them.

"These are six children I personally know, six children my son has played with," she says. "It drives me crazy these kids would have stood a better chance if this new treatment were available."

The cookies, which sold for $30 for a dozen, raised more than $200,000. Witt says she's thinking hard about the next project.

Sometimes Witt gets frustrated that parents have to sell cookies, or hold golf tournaments, to fund medical research. "It's totally sad. It's ridiculous. It makes me mad," she says. "But I can't get wrapped up in that or I won't get anywhere."

Witt says last week she received the best Christmas gift ever: Memorial Sloan-Kettering signed a contract with a biotech firm to begin work. "They're moving forward, and that's huge," she says.

Appreciative beyond measure,

Cami, Mike and boys