Making a Difference

To my hearts desire, Trey's blog has done so much more than keep our family and friends updated. This tender story is about how instead, Trey's blog has helped a family in their search for a diagnosis for their daughter Kaitlyn. As Kaitlyn's daddy writes;

"June 17, 2009
Hello,
I came across your site while researching my daughter's condition, which her current doctors haven't been able to determine, and from the description and the photos of your son, I believe she may have MPS IV too. I'd love to speak with you a little bit and perhaps get some information on your son's doctor.
The URL that I'm including is a recent photo of my daughter. The wrists, bell shaped chest, knocked knees, short neck and short stature all seem to fit, but I just don't know, and neither do her doctors. Her genetics doctor is baffled and after months of waiting we still don't have any answers.
Would you mind contacting me? I'm going crazy not knowing what she has and I'd really like to get her to a specialist ASAP.
M. O’Donnell, Charlotte, NC

September 8, 2009
I want to thank you for sharing your story with the world via your blog. We wouldn’t be where we are now without it. You’ve raised awareness on the subject, and helped this family tremendously in doing so… so thank you! It’s sucks beyond words that anyone should have to deal with this. I can completely relate to how your husband feels, and I’m sure you too. We feel so hopeless at times because it feels like there is so little we can do for our child, and like most guys, I want to fix something when it’s broken or wrong. This I can’t just fix. And the unknown future and all the negative possibilities that get thrown at us scare the hell out of us, but we fight to hang on to hope, and know, that at the very least, we can get the word out on this disease so that more people are aware of it and hopefully more money can be made available for research. HOPEfully one day soon there will be help for our children. M. O'Donnell


September 13, 2009
The enzyme test came back and confirmed it is Morquio syndrome. Type A.
This is all so surreal to me right now. How did this happen? What are the odds that I could have stumbled on a picture of Trey on Google images and found this rare disease that that our kids both share? All of this just seems so unbelievable. M. O'Donnell

I am shook to tears reading the recap of what entailed many, many detailed emails back and forth between myself and Kailtyn's father. To help, to listen, and to give strength to a family that we understood with every single tear drop, every bit of heartache, and every sleepless hour what they were going through. I remember the pain like it was yesterday...and honestly Mike and I still feel that gut wrenching pain so often like time has just stood still with the feeling cutting just as deep as it did the day Trey was confirmed.

Although it is so difficult to face the reality that little Miss Kailtyn was positively diagnosed with MPS IV A, it sheds a bit of sunlight on the fact that Trey's blog was able to help and possibly keep this family from going through the unknown and misdiagnosis that we endured for an entire year.

God Bless the O'Donnell family, it was my sincere pleasure ~Cami

Dunkin Cops - Fundraiser for Treys Treasures!

This coming weekend, October 2, 3rd and 4th the 1st Annual "Dunk a Cop" will take place at the Tempe Town Lake. The hours are Friday from 5pm-9pm, Saturday and Sunday from 10am-10pm, proceeds to benefit Trey's medical fund. Please come take your aggression out at the dunk booth and "dunk a cop" for Trey. Dunk a cop, and win a tshirt as bragging rights to let everyone know you did...all to benefit a great cause!

Thank you Dunkin Donuts for creating and donating the t-shirt giveaways!

GO Thundercats!

Mike and I signed Trey up for his very first organized athletic team. Soccer was his sport of choice. Yesterday was Trey's first practice with his first game following. The 107* temperature made for a very hot day for the kids. Trey was such a go-getter, we are very proud of him! After the game Trey was awarded the medal for best sportsmanship - he couldn't wait to show anyone and everyone who would look & listen.

Not better but NO WORSE

Trey's appointment with his Arizona pediatric orthopedic was yesterday. This appointment was to check the curvature of Trey's spine to be sure that the percentage of the curve has not gotten worse with the growth hormone. Dr. White discussed with us that although he didn't believe that Trey's spine could improve due to the fact that Trey is missing the front part of his vertebrae at the portion of the curve/protrusion/kyphosis, we can stabilize it. We were told that Trey's spine is no worse than the x-rays from March showed. Mike and I believe that building the muscle around the spine has been a huge factor in stabilizing Trey's spine and thus allowing us to continue with the growth hormone. This news was very encouraging to us and gave us the incentive to keep plugging away at all the physical therapy we have Trey doing because if it's no worse, we are doing something right. p.s. Trey was in his glory when they had us wait in a room full of sports posters of his "Cardinal Birdies", was a pro when he went to take his x-rays and was a goof ball with Dr. White!

Walking for Hope

This morning Trey's Treasures walked for hope - HopeKids that is. Trey's Treasures sponsored a team of family members to pay it forward to HopeKids for coming alongside Trey on his journey and constantly providing him with a calendar full of fun, highly anticipated events to always look forward to; helping to restore hope and joy and building strength and the willingness to keep fighting. HopeKids desire is that with the promise of a new event always just around the corner, hope for the future is a constant state of mind! Along with getting to see MPSIV friends, Justin and Kianna, and having the nice surprise of running into some familiar faces from his school at Fulton Ranch, Trey also had the privilege of meeting the founder of HopeKids, Mr. Rob Cottrell. Thank you to our beautiful family for rising so early and enduring the heat for such a superb cause, we loved spending the morning with you!
p.s. a huge Thank You to our family friend, Pete, at Whatsupsprotswear for filling my t-shirt order in less than a weeks time...Trey just loved seeing his logo on all of our backs.

Yes Sir!

Friday, Trey got to accompany his Uncle Bryan in preparation for NCO Academy by spending the entire day with him and his Aunt Cathy. First stop was going to Uncle Bryan's guard unit to pick up orders as well as getting the distinct honor of meeting what Trey calls Uncle Bryan's "Yes, Sir friends" (his Security Forces coworkers). Trey got to tour the base, get spoiled by his Aunt and Uncle and wrapped up the day by going to Luke Air Force base to pick up Uncle Bryan's uniform. Of course Trey got his very own uniform too - Trey calls it..his own "Yes Sir" uniform. Good bye for now Uncle Bryan, have a Happy Birthday while you're away, I'll miss you and can't wait for you and I to go trick or treating.

Does he know?

Lucky or not when a new intern at Trey's PT asked "does he know?" I was still able to say, "NO" and feel so thankful that my answer is still, no. Trey is just beginning to talk about going to the hospital to get medicine in his boo boo and noticing that he has a port but other than that, he thinks and acts just like his two brothers (maybe even with less fear). Yesterday he was looking in the mirror and pointed to his flared ribs at the bottom part of his chest and said, "look mom, look at my big muscles"...gotta love em' God bless you sweet baby!

ARE YOU READY FOR SOME FOOTBALL?

My boys are...Broc painted his and Trey's face for this past Sunday's game - Trey loved it and wanted to wear his face paint to school today - sorry buddy, keep your love for the game and the face paint out of the classroom.

Star Student

Trey was the STAR STUDENT in his preschool class this past week. A poster was brought home to fill out all about Trey's family, favorites and photos. In the section that asked what Trey wanted to be when he grew up, he said a doctor. Trey had so much fun being Camryns (Trey's cousin) doctor, Camryn was such a patient patient too. Day 1 Trey got to show off and tell about his poster "all about Trey". Day 2 Trey was told to bring in his favorite book so his teacher could read it to the class, Trey choose "Ten Little Ladybugs". On Day 3 Trey was allowed to bring a toy for show and tell. Trey brought, "Lucky" his 'build a bear', Cardinal Bear. He had such a fun filled week. Trey is really enjoying and excelling in preschool and the weekly reports confirm just that.

"Let's show her"

Iknow, I know, I say this often but Trey is the sweetest and cutest thing ever! We went to visit Jeff and Stephanie. Once again, Trey wanted to be a part of everything Stephanie does with his baby Emma. Today, Trey got to help put baby lotion and clothing on his baby. He even got to help pick out what he was going to dress her in from her outfit to her mittens to finding a headband that would match the best! Stephanie is so patient with Trey, she pretty much let him run the show and off he went with a huge smile on his face the entire time - dressing and putting lotion on his baby. After Trey (and Stephanie) were done, he said, "lets show her" and walked into the living room so he could "display" his baby Emma and her cute outfit and pretty smelling skin to all of us. Trey was so proud of himself and was glowing from head to toe. It is so endearing to see Trey take to Emma like he does and to love her the way he does. Uncle Jeff says that Trey is Emma's angel.

Nice Chompers

8/8/09 Once again a great report from Trey's dentist appointment. Trey had no cavities and his gums were NOT swollen from the GH (the only concern we would have as a dental side affect from the growth hormone). We were told that Trey's teeth were more jagged than most and to just make sure to always brush good and deep on the top surface of his teeth. It was also observed that Trey's bottom jaw is larger than his top (opposite from the norm) and that we may have to focus on changing that sometime soon. Other than that, Trey was told he had SUPER-Hero teeth and to come back in March. Always a relief to Mike and I when an appointment of any kind go off without a hitch.

Swimming, swimming, just keep swimming!

I was so extremely touched by the magnitude of care EVO swim school displayed to Trey and myself this past Wednesday! Trey has been trying his hardest to pass the test to graduate himself into the next level of swim lessons (from an Otter to a Seal)...bless his heart! EVO has a guarantee that if you don't move up to the next level within 3 months, they will give you a discount on your months dues until your child is able to advance. I explained when we began that Trey may not be able to progress at this rate. After three months was up and a few weeks of trying, Wednesday the instructors (Jennifer and Larry) worked with one another to try to figure out were Trey was laking the strength to be able to complete an exercise he needed to move forward. Jen, the PT, showed up and together after trying the kick board, paddle board, noodle and vest, an ankle float wrapped around Trey's waist would give him the help he needed to build the muscle's required of him to continue to the next lever at EVO. I thanked all three of the instructors with tears in my eyes and again told them that if this wasn't the right place for Trey then we understood and would look into more of a PT/swim lesson. Larry said he had spoke to the owner, David and without hesitation that this was the place for Trey to be and that they would help Trey as much as possible to achieve his/mine and their goals. At the end of the lesson Trey got to float in a boat for a bit just before Miss. Jennifer tipped it over to test how Trey handled finding his way to the side of the pool without assistance - no problem. We are in the right place alright!

The following Friday I explained to Miss Stacy at Spectrum Spine that we would like for Trey to build the muscles in his wrists, forearms and shoulders and again, without hesitation she modified his pool and gym PT to incorporate this goal.

Watch out Michael Phelps, Michael Trey will be on your "fins" in no time!

Time off

8/20-8/30 Mike and I cruised Hawaii for my 40th Birthday and I have to say that the time away was just what the "doctor ordered". Every time we called home, the boys were either sleeping, heading out the door or kept it short because they were busy, and not once did they cry for us to come home soon...how nice is it to have the help of family to take care of your most precious treasures and be able to get away to enjoy some one-on-one, down time together? We made sure to train everyone on how to administer Trey's growth hormone shots and felt very comfortable about leaving that task in the hands of our family too. Mike and I are so lucky and can't thank you all enough for making the boys feel so comfortable at home without us that we could actually enjoy our time away and not feel guilty about not taking them with us. Should I feel so good about that? haha! The hugs we got when we returned were the kind you'd want to bottle for a lifetime...my heart was filled with joy! I wished so bad that we could have returned home only to take the boys back to Hawaii with us to be able to live without a care in the world, in Kaui, in PARADISE.

INTRODUCING..."MY Emma"

Treys' Emma (our new niece) was born while Mike and I were in Hawaii (see first photo- Aunt Cami's gift to Emma from Hawaii) . My mom reported to me that as she was taking the boys to the hospital to meet their new baby cousin, Trey ran back inside heading stright for his room to grab a tiny pillow that he informed my mom he needed to give to HIS baby Emma. The little pillow was Trey's when he was a baby. Since we have been home and had the pure pleasure of meeting our precious baby girl as well as letting the boys see and hold her, we have come to find out that this is Trey's baby and that if I go to visit the baby without Trey, he get's very upset. So now, I have to remember not to tell Trey when I see "his" baby while he is at school unless I am up for some tears and a whole lot of "whys?" Trey has been the baby in our family up until now so none of us were sure how he would react to a new little one taking his place. But... low and behold, Trey just loves having Emma around and has to be a part of everything Stephanie does with the baby while he is visiting. We are over the top with the birth of our famlies new addition and are in love, love, love! Congratulation Jeff and Stephanie~she's beautiful. Thank you for adding a bright ray of sunshine to all of our lives.

Mr. Handsome with Beauty and the Beast

8/15/09 As an early birthday gift to me, John and Joyce took our family for a night out on the town. We enjoyed dinner along with a magical showing at the Hale Theatre of "Beauty and the Beast". Trey was so entranced with "The Beast". I have to admit, I wasn't too sure how Trey would do at a live proformance (sitting still, not talking aloud, touching the people in front of us, etc.) but he made the live viewing a great time as he behavied like a perfect little gentleman (as did Drake and Broc). Wow, my little men are growing up. Our night out wasn't as much "work" as it use to be.

A Pinch to Grow an Inch!

Trey had his two month check up with his pediatrician today and would you BELIEVE that he grew?! According to the Trey's charts from the last few visits, he has grown 2 inches. I know to take this with a "grain of salt" but even a centimeter is music to my ears. Mike and I were moved to tears of joy. We were also informed that Trey was ounces from gaining a full pound and that his growth and height charts show him consistently going up - up - up ! We will have our next check up in three months but for now we will take every centimeter or INCH we can get. This is also good news for making a case to the drug provider of Trey's growth hormone, with these encouraging results, we may even qualify for continued assistance.

I also asked about Trey's right ear and the discharge that was coming from it, as he was complaining about it yesterday and woke up today with the outside of it all crusty. I was nervous that the tube may have fallen out and that he may have gotten an inner ear infection. More good news, the tubes are in place, the doctor saw a nice, open, view from one end to the other. Trey's ears are just draining and nothing more. We were given ear drops to dry up the fluid that is irritating Trey's outer ear. Mike had just gotten over swimmers ear and has been administering ear drops nightly. When Trey saw that he was given the same medicine as daddy he just couldn't wait to tell him all about it - "Just like Daddy" he said.

And if that wasn't enough positive news, we heard back from St. Joe's today and will continue our discussion with a follow up meeting at the end of September.

Today was preschool pictures for Trey and I must say, boy o' boy did my baby look handsome!

LET GO ~ LET GOD

A Great Start

This past Tuesday Mike and I attended the first of many meetings for the 2nd "Trey's Treasure Chest of Hope" fundraiser. It was so moving to see the faces that were there to offer any and all help to make this another successful event as well as hearing about all the others that couldn't make it but were "on board".
I know I've said this before but there are times when the words THANK YOU just aren't enough...again, this is one of those times! A huge THANK YOU to Dan and Robert for taking this on and for being so motivated and organized! To see first hand that they obviously put their heart and soul into making sure this will be a tremendous success and for that alone, THANK YOU just doesn't seem like enough.
* "Trey's Treasure Chest of Hope" will take place February 2010 *

Babysitting Bella

Trey and I had the pure pleasure of babysitting our new “four-legged” niece, Bella. The day was so much fun seeing Trey and Bella frolicking, chasing and bonding with one another. Trey has never had a puppy to play with (our Golden Retrievers are “big dogs” to Trey), to see him play with an animal his size was so entertaining. Trey decided Bella needed to take a nap when he did, and she was more than ready…”Mr. Busy” gave this new little puppy a run for her money in the “energy” department. Thank you Auntie Cathy and Uncle Bryan for the experience…Trey loves his “Bewwa”!

Meeting New Friends

August 7, 2009

Finally after emails back and forth today was the day that Trey and I would at last get to meet Kianna, Justin and their mom, Darla. HopeKids put Darla and I in touch with one another a few months ago but busy lives and the desire that we could somehow coordinate both of our schedules as well as with the newspaper photographers so that he could catch this first meeting was just that…wishful thinking. So, today the three kids met as well as Darla and I (face to face). After some “warming up” on Trey’s part, the kids played games and by the end of the visit, Trey had found two new friends. Darla informed me that this was the first time Kianna and Justin had met another person with MPSIV, just like them. Justin (15) and Kianna (13) were so patient with Trey…after a few hours with “Mr. Busy” I question when they they’d like to hang out with him again. When Mike walked through the door from work, the very first thing Trey said to Dad dy was, “I have friends”. From what we understand (I am careful how I say this anymore) our three are the only MPS IV children in the state of Arizona . How great is it that we live so close and that the kids really took a liking to one another? I am so excited to have Darla as a friend and for Trey to have Justin and Kianna in his life today and tomorrow when their friendship will mean the world to him.

Alone with my THOUGHTS

August 6, 2009


I fell asleep after the news last night then woke up only to find myself alone with my thoughts. I checked in on the boys and just stared in awe at their angelic faces. I thanked God for each of them then went back to our room. Still not able to sleep, I did what I do on most nights that this happens and took out a book of mine that always, always comforts me. I turned the book to today’s date and low and behold, this is what it read;

Sometimes God causes severe winds of trial to blow upon his children to develop their gifts. Just as a torch burns more brightly when waved back and forth and just as a juniper plant smells sweetest when thrown into the flames, so the richest qualities of a Christian often arise under the strong winds of suffering and adversity. Bruised hearts often emit the fragrance that God loves to smell.

Again, my worries were put to ease as asleep I went.

Maybe one day I’ll understand but for now… thanks to priceless books like these, at lease I am able to rest.

The Heart of a Child...Amazing

5 Fundraiser Spotlights-all given by kids under 21!
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Tempe Explorer Program
Christmas 2008


The Tempe Police Department’s Explorer Program is for young men and women ages 14-21 who are interested in law enforcement as a possible career. Among other respectable tasks the Explorer Program is involved in community service projects. We strive for an inclusive group of young men & women who not only believe in themselves but also in giving back to their community.

At the command of Sergeant Kat herine Click, the Explorer’s awarded our family their community service project. These kids “raided” the local Target and bought Christmas presents for our entire family. This group of explorers were so kind as to ask for Drake, Broc and Trey’s Christmas list and then beyond our imagination the kids were showered with a truck load of presents! Mike and I were also graced with their kindness!

Not to have to worry about the money and the shopping at a time when we were traveling back and forth to Minnesota in the midst of Trey’s misdiagnosis…this was a gift we will never forget and one you can’t put a price tag on. Thank you for your generosity, for your kindness, for the love you bestowed upon us at such a wearisome time…thank you just doesn’t seem like enough for all you did for us.



As told by Kathie;

Cami,

I hope all of the presents work out OK and that your family has a great holiday. I am attaching a photo of the Explorers on their big shopping trip. As you can see they had a great time! I don't think this Target will ever be the same.

Take care, Kathie Click
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Cortez High Swim Team Fundraiser- October 2008


The swim coach of Cortez High School , Mr. Ben Hazelton reached out to us through the article printed in the Arizona Republic . Lucky for us, Ben said Trey reminded him of his young son, Kyle and in turn was moved to help. A complete stranger willing to put in so much time and effort towards our angel was utterly humbling. I was in awe with Ben’s determination and drive to turn his ideas of earning money into successful fundraisers for Trey. After countless rejections from the district and the city, Mr. Hazelton was still able to produce two very victorious fundraisers. Although on a much smaller scale than Ben had originally envisioned, we were so impressed with the coach and his team’s efforts.

Ben writes, “We had our Swim-A-Thon for Trey today and by the # of laps done, you would be proud. Adding together all the laps done by the swimmers, a total of 2,198 laps were done. This is equal to 54,950 meters or in laymen's terms over 36 miles in the water! I jumped in myself for 104 laps and our farthest swimmer was logged in at 226 total laps!”

To add to their accomplishments, these kids swam in a cold pool on October 3rd! Can you say dedication by these remarkable kids?

During the car wash, 55 vehicles were washed, only 3 of them being car’s with the rest being minivans,SUV’s and trucks! The team washed for an arduous 4 ½ hours!!! Another successful event entirely fashioned by coach Hazelton.


Our family was invited to the Cortez Swim Teams end of the year banquet to be presented with the proceeds and to have the honor of meeting Mr. Hazelton and his team. The team too was so very excited to meet Trey and to be able to put a face with the name of the baby they swam and washed cars for…as you can imagine, the girls loved Trey and his blonde curls. We in turn were so privileged to meet the man himself, Mr. Hazelton as well as all his incredible team members. We were so impressed with every one of the high schoolers we met that night. Thank you for the opportunity to be in your graces Ben and the Cortez Swim Team.

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Emily’s Birthday Wish – October 2008



In lieu of presents for herself, this was what Emily asked for…



What 9 year old’s have hearts this big??? How lucky are we to have friends like the Giarrizzo’s to raise a daughter like Emily.



I added a few of the photos taken of Emily and her a her party as well as when she so sweetly gave Trey the poster and “Treasures” they raised at her Birthday party and on Halloween night.



As written by Emily’s Mom;

What a wonderful opportunity it was for Emily to do this, and it was truly heartwarming to see all the kids so fired up to help Trey. They all signed a poster for him and while trick-or-treating, they asked every house if they would donate towards Trey’s fight. It was heart warming, and the response was great. At the house the kids signed the poster & ate, next they went to a “haunted house” here in the community, then they piled into 4 SUVs to trick-or-treat in the neighborhood (it was a caravan from house to house). We returned back to the clubhouse for a costume contest, snacks, cider & cocoa. The kids that came up from the Valley (11 out of 21) spent the night.

Much love,

Kris