Presentation Day

Today Mackenzie is giving a presentation to the entire 1st grade at her school.  The Arthritis Foundation through it’s Kids Get Arthritis Too website created a beautiful PowerPoint presentation for kids to use to educate others about Juvenile Arthritis.  They are able to customize the presentation to fit them and their audience.

Last night we spent some time practicing the presentation.  She made adjustments to the presentation to make it easier for her to read or to fit her personality.  It was really fun to watch her grow just through the preparation of the presentation.  When we left school yesterday and she had just found out she was doing the presentation today, she was really upset and worried (the point of a few tears).  But as we talked about it more and started trying to put her fear into perspective she discovered that giving the presentation wasn’t nearly as scary as her quarterly blood draws are.  Then as she read through the presentation and adjusted it to make her own she got more and more excited and less and less worried.  Last night at bedtime she went through the presentation for her daddy and when she was done he asked her if she was excited.  Her response was “do you remember the glass of milk you gave me at dinner? Do you remember how much milk there was?  (there was just below half a glass).  Well the part that was milk, I am that much scared.  The other part, I am that excited”  This morning I asked her again.  This time her response was made using her orange juice glass.  It has pictures of oranges with the leaves on them on it.  She pointed to the very top of the decoration and the top of the glass and said “See this leaf?   I am excited all the way up to it and only scared this little part above it”.  There was about a half inch of space above the leaf.

When Mackenzie is done giving her presentation today she and I will be introducing a fundraising challenge to the first grade classes.  Next week in school they will be holding a Penny Wars.  All of the money collected during the Penny Wars will be credited to Mackenzie for her Walk to Cure Arthritis goal.  We are also hoping to get the rest of the elementary involved during the lunch periods next week by having them donate to their favorite first grade teacher/classroom.  This is a super exciting time for Mackenzie and we are truly blessed to have such an amazing school and supportive staff to work with there.

30 Days

We are just 30 days away from the 2017 Walk to Cure Arthritis in Grand Rapids and we are getting excited for the event.  We would love to have a huge turn out for our team to support Mackenzie.  This has been a rough year for her with her relapse and the support means a lot even if she doesn’t always know how to show it or express it.

We are still over $2000 away from our fundraising goal  and coming up short of our participant goal and it’s hard.  (Losing out on our big fundraiser was heartbreaking for us)  We haven’t even managed to match last year.  I know we still have 30 days but I can’t help but feel we are coming up short and I know this money really does go to fund things that are important.  The Foundation has a history of advocating for and with patients at both the state and federal level.  They fund programs for those with arthritis including JA Power Packs for kids diagnosed with arthritis that include tools and information to help navigate a new diagnosis and a bear that can be warmed up to help comfort sore and achy joints.  They fund family and kids programs like the JA Conference where families all around the country can come together to learn and share with families all facing this terrible disease together and Camp Dakota and other JA Camps around the country…a special week of summer camp just for kids with active arthritis.  This camp allows kids with JA to experience summer camp and childhood in an environment where they won’t feel different or limited or excluded because of their JA.  And most importantly they fund critical research for relief of symptoms of the disease and ultimately the goal of a cure!  And we need a cure!

If you can spare a dollar or two now for a donation or an hour or two on May 6th to walk with us, please click on this link and join us.  Whether you believe it or not, even one dollar makes a huge impact and every person that walks with us May 6th makes an impression (especially in the eyes of a beautiful little girl).  http://www.walktocurearthritis.org/grandrapids/mackenziessidekicks

On a different note regarding the Walk, The Arthritis Foundation reached out to us and made us a new Face of Arthritis sign for the Walk.  It blows my mind to think that we are on year number five of fighting this horrible disease.  She sure has changed since her last sign was made three years ago:

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A Challenging Year…

This year we’ve found ourselves being “challenged” to raise funds for the Walk to Cure Arthritis.  It’s hard to believe that this will be our fifth Walk.  Last year we were walking in celebration of Mackenzie’s health at the time and the thought that she was on her way to remission.  This year we walk with a renewed purpose to find a cure after Mackenzie relapsed last summer.

Our first year, 2013 we raised over $6000.  Our “big” fundraiser that year was a Gently Used Book Sale and Bake Sale but the majority of our donations came simply from our asking.  For many the cause was new (many didn’t know a two year old could have arthritis).  In 2014 we hosted our first ever Mom2Mom Sale in March of that year.  It was a huge success with all of our seller spaces filled and a line at the door on sale day with shoppers waiting to come in and shop.  It was truly amazing.  It was also the year the Arthritis Foundation asked Mackenzie to be the Youth Honoree.  Her face was everywhere including on television.  That year we raised over $4500.  2015 was our second largest fundraising year with just shy of $5000 in donations.  That year we hosted two large fundraisers, our 2nd Annual Mom2Mom Sale and we published a cookbook – Cooking for a Cure with Mackenzie’s Sidekicks.   In both 2014 and 2015 we also partnered with area restaurants for Give Back events in which the restaurant gave our team a donation based on a percentage of food/beverages purchased on a specific date.  Last year was our “small” year.  It was small in donation support and small in team size.  We raised just over $1600 and had a team of twelve walk with us on Walk day.

This year we are just 40 days away from the 2017 Walk and we have raised $920 of our $3000 goal and have 5 registered walkers of our 20 walker goal.  Our largest annual fundraiser was cancelled due to a lack of participation (we couldn’t get enough sellers to fill the sale) and so we find ourselves having to work harder to raise the funds that go to help support the Arthritis Foundation in their work of education, advocacy and research and development towards a cure.  We know there are numerous causes out there continuously asking you for a donation….Relay for Life (American Cancer Society), Parkinson’s, Diabetes, and many more.  We feel it too.  Even the school system has the kids fundraising for not only the school but also the American Heart Association with Jump Rope for Heart.  We know you feel the pressure of all of these organizations (and all very worthy organizations) asking you to give and give and give.

The difference for us is that we also feel the hurt, the loss, the frustration of arthritis as we watch our almost seven year old daughter battle this invisible disease for what is now her fifth year.  Some of these other causes are very near and dear to us as well, as they raise funds for cures for illnesses and diseases that also have had or currently have an affect on our family, but this….the Walk to Cure Arthritis, is our #1.  We will continue to put it at the top of our list until we can find a cure!  We will continue to raise awareness that arthritis isn’t just an old person’s disease.  We will continue to raise awareness that there aren’t enough pediatric rheumatologists in the country to treat all of the children currently diagnosed and those that will be diagnosed in the future.  We will continue to fundraise to fund more research and development of medications that will give those suffering a better quality of life until a cure can be found.  And most of all we will fundraise to find the CURE!

If you can spare a dollar, or two, or more we ask that you consider helping us reach our $3000 goal by donating to the 2017 Walk to Cure in support of Mackenzie and her team.  We ask that if you are willing to host a fundraiser for us that you reach out to us and let us know (a blue jean day at the office, a coin challenge in your classroom(s) or office, a raffle, and event, etc), we will be happy to partner with you.  Every dollar helps, there is no such thing as too little of a donation.  We would also love to have you join us on May 6th at the Walk at John Ball Park/Zoo.  The event is a very easy stroll around the perimeter of John Ball Park and for those that donate/raise $30 or more you receive free admission to the Zoo for the rest of the day.  It’s just a couple hours out of your Saturday, one day of the year to come out and support Mackenzie and show her that she is not alone in her battle against arthritis.

To donate or join our team or both, simply follow this link: http://www.walktocurearthritis.org/grandrapids/mackenziessidekicks

Thank you so much for taking the time to read this and as always thank you so much for your love and support of Mackenzie.  Together we can find a cure!

Adding a little fun and humor to our Quarterly Check Up at Mott Children's Hospital.

Adding a little fun and humor to our Quarterly Check Up at Mott Children’s Hospital.

4th Annual Mom2Mom Sale

It is a new year and so it is also time for our 4th Annual Mom2Mom Sale.  This year we are moving the sale back to March.  For the past two years we have had the sale in April with mixed results.  Two years ago we hosted the sale in Spring Lake at the Holiday Inn and had a good shopper response even though the sale was on a weekend of Spring Break.  The down side of that sale was the cost we had to pay for the room at the Holiday Inn.  It really cut into the funds we were raising for the Arthritis Foundation.  Last year we again attempted a sale in April back at our original location at Our Savior’s.  We had a great shopper turn out but due to so many other sales in the area (including a huge one in the mall sponsored by a local resale shop) we didn’t have a great seller response.  So this year we are going back to March and again returning to our original venue at Our Savior’s.  Our first sale here in 2014 was a huge success.  We had 20 sellers and over 200 shoppers.  Both sellers and shoppers alike went home happy that day and we were able to raise a wonderful amount of money towards finding a cure for arthritis.  Please help us make this sale another huge success by helping us spread the word.  We have a flyer posted here under our events tab and also an event page on Facebook.  Please share and invite everyone you know.  Thank you all for your continued support of Mackenzie and our goal of finding a cure!

Illness and Flares

Unfortunately Mackenzie has caught the stomach flu.  Poor kid was up at least six times during the night and is still miserable today.  To add to her upset shehad to miss her favorite thing…school and the cherry on top, it’s Girl Scout Day and she is going to miss her Girl Scout meeting.  She is one very unhappy little girl today.  Hopefully this is a quick moving “bug” and leaves just as quick as it arrived.

To add to her not feeling well and missing out on her favorite activities she is also unfortunately experiencing a flare in her arthritis.  This is a part of this awful disease that she will most likely be burdened with for the rest of her life even if she achieves remission.  The flares occur even when the disease is under control or in remission because her immune system is working extra hard to fight the virus she is currently affected with.  Arthritis is an auto immune disease in which her immune system attacks her joints as if they were a virus or foreign element within her body that should be eliminated.  So any time she catches a cold or any other type of virus or illness and her immune system ramps up to fight the infection it also tends to go back and disrupt her joints as well.  It’s a vicious disease and a vicious cycle that she will most likely not outgrow.

Hopefully this is a short term set back and she will be back up on her feet again soon.  She is due her next injection of Enbrel this Saturday so we have to get her feeling better so she can get it.

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A lot of changes in almost a year….

We find ourselves once again in what we loving refer to as “Walk Season” as we gear up for another Walk to Cure Arthritis with the Arthritis Foundation.  This year the Walk will take place on May 7th and we will once again be at John Ball Park.  Mackenzie is already super excited about the event and can’t wait to see everyone in their orange shirts.

Since last year’s Walk, Mackenzie has experienced a lot of wonderful things:
* She went on vacation to Niagara Falls and Boston, MA
* She had a check up in June that showed no active signs of arthritis
* She started Kindergarten and LOVES it!
* She started her third year in gymnastics – this year she started in level A1
* She had a check up in September that again showed no active signs of arthritis and so we were instructed to begin backing down her medication. She started receiving her 50mg injections of Enbrel every other week instead of every week.
* She went on a long weekend vacation to Mackinac Island (her second favorite vacation spot…comes in right behind visiting Mickey’s House [aka Disney World])
* She once again was invited to participate in the Tribute to Excellence Dinner for the Arthritis Foundation as a greeter. She had a ball!
* She had a very wonderful holiday season (Halloween had her dressed up like a Minion, Thanksgiving was filled with lots of yummy turkey, and at Christmas Santa brought her a new Pooh bear)
* She had a check up in January that still showed no active signs of arthritis and so we were instructed to further back down her medications to 25mg injections of Enbrel every other week

And now here we are.  It is February and Mackenzie has been on the lowest levels of meds she has experienced since her diagnosis back in November of 2012 and she is doing amazing!  My heart just soars as I watch her grow, play, participate and enjoy childhood.  These things weren’t even possible for her just a year ago!  We have so very much to be thankful for!

As we get ready for the Walk on May 7th we will once again be hosting our Mom2Mom Sale as our “big” fundraiser for the Walk.  The sale will take place on Saturday, April 16th at Our Savior’s Lutheran Church from 9a to 1p.  There will be between 20 and 25 vendors selling infant and children’s clothing, baby equipment (car seats, high chairs, pack ‘n plays, swings, strollers, etc.), toys, books, games, and much more.  There will also be a Bake Sale and a Girl Scout Cookie Booth (Mackenzie will be there selling cookies so be sure to stop and say hello).  For more information on the sale or to register for a sellers booth please click on the Contact Us tab and send us a message.  You can also find a flyer with more information under the Events tab.

Over the months since the last Walk we have also been introduced to new families that have had a child recently receive a diagnosis of Juvenile Arthritis.  We have also watched as members of our JA family have struggled with set backs, numerous surgeries, being wheel chair bound, have siblings receive JA diagnosis’, have medication reactions and more.  As we celebrate the amazing progress Mackenzie is making everyday our hearts break for our JA families that are struggling.  For this reason we will always pray, advocate, fundraise, and generate awareness about this disease.  We will not stop until a cure is found!

If you would like to join Mackenzie at the 2016 Walk to Cure Arthritis please click on this link and then click Join Team.  She would love to have you come support her and Walk with her.  http://www.walktocurearthritis.org/grandrapids/mackenziessidekicks  (if you are unable to click on the link, please copy and paste it into your browser). We always have room for more Team Members.  It’s free to register so mark your calendar and plan to be at John Ball Park on May 7th to support Mackenzie and help us Walk towards a Cure!

Here are some images of the almost past year of Mackenzie as she has grown and finally experienced childhood as she should!

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2015 Walk to Cure Arthritis Pictures

Better late then never, here are pictures from the 2015 Walk to Cure Arthritis in Grand Rapids.  Thank you again to one and all that walked with us, donated to the team, and are continuing to support Mackenzie in her fight to find a cure!

Happy Birthday Mackenzie!!!!

Today our beautiful hero turns five!  What an amazing gift we were given five years ago!  There are no words that could truly express how blessed we were to be granted a miracle we named Mackenzie.  She is truly a beautiful little girl both inside and out.  She has a huge heart!  She is compassionate and loyal!  And she is our hero!

Mackenzie has taught us so much about love and laughter through good times and bad.  She has taught us about true courage and strength as she has fought this disease called arthritis.  Not many moms can say they gave birth to their hero, but I can.  She is an amazing little girl who is going to give the world a run for it’s money.  I can’t wait to see what the future holds for her.

Happy 5th Birthday Mackenzie!!  We love you so very much!!!

Just 19 Days until the 2015 Walk to Cure Arthritis

It’s hard to believe that the 2015 Walk to Cure Arthritis is almost here.  We have just 19 short days left to reach our goals of 20+ team members and raising $5000.  Even if we don’t reach our fundraising goal (it was a lofty one for us) we would really love to reach our team member goal.  If you are reading this, have you signed up to walk with us?  It’s really quite easy……

The 2015 Walk to Cure Arthritis is Saturday, May 2nd at John Ball Park.   Registration/Check-In begins at 8:30a and the program and walk begin at 9:40a.  There are two courses you can walk, a one mile course and a three mile course.  There is no fee to walk with us, however all walkers ages 3 years and over do need to be registered.  If a walker raises or donates $25 or more they will receive a wristband for complementary admission to the zoo for the remainder of the day.  Talk about a great family outing!

There will be all sorts of fun things to do before the walk during the Registration/Check In time.   There will be a terrific juggling act to watch from Just Josh Juggling.  I’ve heard a rumor that Griff from the Grand Rapids Griffins will be there.  And there will be exhibits from the event sponsors as well.

After the walk we will be hosting a picnic (weather permitting) for everyone that walks with us.  We will be grilling hamburgers and hot dogs and have chips and cookies for everyone before they head into the zoo or off to enjoy the remainder of their day just as our way to say Thank You to everyone that comes out to support Mackenzie.

Do you have questions or want more information?  Just click on the contact us tab and drop us line.  Or if you would like to walk with us on May 2nd, visit http://2015arthritiswalkgrandrapids.kintera.org/mackenziessidekicks and click on Join Team.  We hope to see you there!

Bad Days vs. Good Days

Lately all of the posts here have been about this fundraiser or that fundraiser so I thought maybe it was time for an update on Mackenzie.  This time of year especially, Mackenzie will have good days and bad days and those can literally change in the blink of an eye.

This is what a bad day looks like.  The past weekend we had been experiencing near record cold here in Michigan so we had been keeping Mackenzie in the house over the weekend to avoid too much trauma from the cold.  Unfortunately yesterday she was still on Winter Break and I had to go to the grocery store and that meant Mackenzie and Paige were both in tow.  It was cold.  Not as cold as over the weekend, but cold none the less.  We drove to the store and both girls walked from the van in to the store.  Paige of course was ready to shop.  Mackenzie on the other hand was moving slow and it took her the better part of the time we were at the store to start feeling better.  Then it was time to leave and the girls walked from the store back out to the van.  Paige hopped right in while Mackenzie struggled to get in.  When we got home it we had lunch and then Mackenzie crawled in the chair, pulled the blanket over herself and stayed just how she is in the picture above until almost 4p when it was time to leave for gymnastics.  She got to gymnastics and was feeling a little better but I noticed as she stood in her leotard and waited to go in that her right knee was swollen.  Gymnastics seemed to help with the swelling and she seemed to perk up because of it, which we are thankful for.  After dinner it was a soak in a warm tub and off to bed for her.  It was a rather quiet night overall.

And this is what a good day looks like.  This morning Mackenzie woke up like a whole new kid.  She was feeling good, bouncing around the house full of energy and excited about getting back to preschool and going out for dinner tonight for the fundraiser.  You would never know looking at her this morning that she struggled to get out of a chair yesterday.  Arthritis is an unpredictable and uncompromising disease.  And to look at her you would never know she has or does suffer for it’s affects.  Just look at this picture of her beautiful, smiling face.  You would never know to look at her that she was in pain less then 24 hours before it was taken.  We are extremely thankful for the support, prayers, and love she receives from everyone around her and everyone that has met her.  That is what gets us all through and helps us get through the bad days so she can enjoy the good ones.