A Warm Welcome

As part of “Courage”, the National MPS Society’s newsletter, they include a section in every issue called “A Warm Welcome”. The Society asked that I introduce our family by writing a column for their newsletter back in 2008 when Trey was first diagnosed with an MPS disorder…I wasn’t ready. I was asked again this past week and this is what I came up with. For those of you who are members of the National MPS Society, this should appear in one of the next two issues of “Courage” under the “A Warm Welcome” section.





Mike and Cami Lane who live in Chandler, Arizona with their three son’s, Drake (8 years old), Broc (7 years old) and Trey (MPS IVA) who just turned 4 this past April. Mike, our hero, has been a police officer for the City of Tempe for the past 12 years. When Cami (aka Mommy) finds the time to fit in a “bit of normalcy”, she take’s to her job in the skies as a flight attendant for Southwest Airlines.



Drake is a 2nd grader who enjoys art, music and sports. Drake participates in soccer, wrestling, flag football and swimming. Swimming starts the week after school let’s out where Drake will defend his 2nd place state record in the breaststroke. As the oldest of three brothers, Drake has proven to be the brightest and best big brother around. He is so protective of his ‘baby’, Trey that most times mom calls him, ‘brother hen’. Drake wants to be a professional football player when he grows up and you better believe we will nurture that aspiration...maybe the payout for such a lucrative career could fund a cure for his “baby”?!



Broc will complete the 1st grade in 18 days, just ask and he’ll let you know. Being the middle brother, Broc enjoys the best of both worlds~having a big and little brother. Broc always plays so sweet with his little brother Trey and forever includes him in all his fun. Broc is a gifted athlete who holds his own, ‘playing up’ in age on his big brothers athletic teams. In addition to being one of the fastest kids in the neighborhood in all age groups, Broc enjoys the outdoors, always with his shoes off. When asked what he wants to be when he grows up, Broc will answer a veterinarian 100% of the time.



And then came, “Mr. Busy”, Michael “Trey” Lane. Misdiagnosed at the age of two with MPS VI, Trey has gone through more than the majority of adult’s will in a lifetime. After enduring forty three infusions of Naglazyme ‘for nothing’ a multitude of tests later and just days before his 4th birthday Trey has now been correctly diagnosed with MPS IVA.



Trey is your typical preschooler who loves his peanut butter and jelly sandwiches, riding on his electric “racer”, Mickey Mouse, The Arizona Cardinals, his “Cardinal birdies” as Trey calls them and his new love…swim lessons. Aside from the usual life most four year olds live, Trey also attends physical therapy twice a week, and a new approach to brain/hand coordination type therapy once a week. Trey’s brothers, mommy and daddy also incorporate PT into his everyday playtime which is the “sly” approach to ‘work’ for a child with such a bone disorder. Trey is also a member of “HopeKids” which affords our entire family local events free of charge as a way of instilling hope to children with life threatening illnesses.



Although Trey stopped growing at about 2 ½ years old he is head and shoulders above the rest. Trey is such a kind and compassionate soul. Mike and I believe that God knew exactly what he was doing when he blessed this family with Michael Trey. Trey make’s our world go around, he brings a smile to everyone’s face he encounters and is the best baby brother two little guys could ever, ever ask for. According to daddy, “he is my little bit of somethin’ and a lotta bit of everything”.



Together with our family and friends we had started a non-profit for Trey known as “Trey’s Treasures”. With our family, friends and the community behind us we have accomplished grand things. Our fundraisers have included our very own “Trey’s Treasures” golf tournament, “Vegas Nights” with Spark of Hope, watermelon slices on the 4th of July, Usborne books sale, Mini pumpkins for a mega cause, Trey’s Treasure Chest for Hope dinner auction, Take Down for Trey, a neighborhood garage sale, Silpada jewelry party, a Swim-a-thon and car wash, WAMU grand opening dedication and fundraiser, Carebear Preschool fundraiser, a golf tournament in honor on my sister-in-law’s late father, a chili cook off, Tempe Police citizens Academy donations, Avon sales fundraiser, the Hard Chargers motorcycle ride, children who have raised money for Trey by opting out of birthday presents instead to give replaced presents to Trey, selling lemonade and popcorn, along with giving their winnings in contest’s to Trey’s medical fund and last but not least a kindergarten class that had 25 trees planted in a National forest in honor of Trey!. This year we are gearing up for another “Trey’s Treasure Chest for Hope” second annual dinner auction and “Dunkin Cops” dunk booth at the Tempe Town Lakes Oktoberfest. Due to the head and heartache that came with the misdiagnosis, we weren’t up to the 2nd Annual Trey’s Treasures golf tournament but have high hopes for next year.



Along with all the fundraisers, we have also been blessed to have Trey’s journey catch the attention of the media. Trey’s story was run in numerous newspapers and ran on many local television stations. Is it those eyes or those curls? We don’t know but what we do know is that what ever it is, Trey’s sweet looks have helped us spread the word and raise awareness of MPS (Trey’s blog alone gets a average of 20 hits a day from North America as well as countries far and wide). After just one article in the state newspaper, we were blessed to be brought together with Taylor (MPS VI) and his family as well as the honor of meeting one of the MPS Societies Board of Directors, MaryEllen Pendleton and her family. This media attention also bestowed us with the generosity of a few local gentlemen. One of these men provided Trey with free full body massages at every infusion he underwent in the hospital, the next provides us free photo processing until a cure is found and the other graces Mike and I with free car repairs and service indefinitely. These blessings come full circle and make myself as well as my husband whom as a police officer doesn’t often get to see the good in society, by opening our eyes to the GREATNESS in people and the love and concern they have for their family member, friend and child who is a complete stranger to them but who just the same is a part of their community.



And our story wouldn’t be complete without mentioning our own “Patch Adams”, Dr. Chet Whitley at the University of Minnesota . We would still be spinning if it weren’t for him and his team of astounding colleagues. The level of care and concern, the attention to detail, the infinite amount of time he gives his patients are with out question a representation of the best of the best. The MPS family is so lucky to have such a brilliant man on their team and we are so privileged to call him Trey’s doctor.



My strength not only comes from those near to me but although far, oh’ so close to my heart, my new and dear friends who are mom’s of children with MPS. Without Margo (Nathan MPS VI), Kaylene (Taylor MPS VI), Jenny (Holden MPS VI), Ellen (Isaac MPS VI), Jen (Eddie MPS IV), Cassandra (Payton MPS II) and Darla (Kikki and Justin MPS IV) to bounce thoughts, cares, concerns and tears off of, I don’t know how strong of a mom I could be for my baby Trey. I have come to recognize that the families of MPS are beyond an amazing group.





Our ‘normal’ will never be the same. In order for me and my family to survive, we too must find a “new normal”…whatever “normal” is anymore. In Don Piper's words: "The new normal is about living to bless. We can be a victim or a victor. It's a decision; it won't come naturally. Take your tragedy and turn it into triumph. Take your test and turn it into testimony. Take your disappointments and turn them into divine appointments. It's a decision. It's a choice. It's not what you go through but what you do with it that matters." Life is never problem-free. But when the bottom falls out, when tragedy strikes, then healing requires a change of perspective. Healing means you've got to find a new normal.



Thank you MPS Society for hearing our story and for all that you do for each and every one of us families that are “fighting this fight”. God Bless you all Y



Appreciation beyond measure,

Cami, Mike, Drake, Broc and Trey Lane