About Us

Brooke and Brielle have both been diagnosed with Spinal Muscular Atrophy Type II.  There is no cure for this disease but the National Institute of Health believes a cure can be found within the next 5 years with proper funding. 

Our family has created this page to inform you about the disease, spread awareness and give updates about our life with SMA. 

Make A Donation

All donations will go towards Brooke and Brielle’s medical needs fund.

Shop! Inspirational Prints & Awareness Bracelets

All proceeds are donated to Brooke and Brielle’s medical fund!

Thank you Angi!


 

Get your Brooke and Brielle Awareness bracelets HERE!

Thank you Alex!

The Latest Updates!
Search This Site:
YouTube Videos
« Sleep Study - Check Respiratory Function At Rest. | Main | A Disney Princess Wedding & More Magic At Disney World! »
Tuesday
Dec132011

2011 Year In Review!

Looking back, this has been a very fun filled and busy year!!  Brooke and Brielle made it to Disney World TWICE!  Once for the Familes of SMA and the second time as flower-girls for a very special new friend.  Brooke was the proud recipient of a power wheelchair and Standing Dani while Brielle was very happy to get a new manual wheelchair due to her growth!  Brooke and Brielle were featured in Midwest Energy Cooperative’s Country Lines Magazine and also raising awareness on the front page of the Cheff Therapeutic Riding Center’s Newsletter!  Brooke was very sick with RSV last April but thankfully she was able to overcome the virus without a hospital stay.  It pushed back her last clinical trial visit at the University of Utah until August.  She is doing very well but we are still keeping a very close eye on her and getting regular blood draws to monitor medication levels.  Brielle completed her first year of pre-school and loved every minute of it!  She has continued to take unassisted steps and can now walk 60-90 feet!  What a huge step (literally) against SMA and it brought all of us to tears watching her.  Her slogan is, “I can and I will’ and is featured in The GSF’s “Never Give Up!” video.  August was “SMA Awareness Month” and we did all we could to raise maximum awareness.  Please read in detail in the time-line below.  We were fortunate enough to make two trips to North Carolina this year also!  The first trip was for the “Annual Rusty Rudder Golf Outing” and the second was just for fun to visit their Aunt Christen and spend some time getting spoiled rotten.  Next up was Halloween!  Brielle dressed up as cowgirl Jessie and Brooke was cowboygirl Woody!  They had a big suprise at hippotherapy that week to find their horses had costumes too!  So much fun!  November 22nd turned out to be a monumental day - Brooke took her first step(s) independently!!  After having the diagnosis of SMA fall upon us, taking steps/walking is something that we never thought we would see Brooke or Brielle do.  We had no idea where the future would take us and where the health of our daughters might be.  SMA is a cruel disease but Brooke and Brielle have been such dedicated fighters and work so hard every single day to push the limits and keep (and even increase) their strength.  Sometimes they have to miss out on playdates and other fun things because they are so committed with various weekly therapies, doctor appointments and appointments with specialists.  We also have to be careful during the winter months to try to stay away from the germs of the cold and flu season.  Sickness can take a huge toll on SMA children and it’s not something we want to take a chance with if we don’t have to!  Hopefully a treatment/cure will be on the horizon for SMA.  We know researchers are working very hard and we appreciate the support of our friends and family this past year!  With your support, we were able to raise a total of $8,618.39 this year for Families of SMA in Brooke and Brielle’s name for SMA research.  Thank You!!

I’ve decided to kind of do a time-line for our year in review of significant events.  You can click on any links and it will take you to the original post from earlier in the year if there is something you’ve missed!

February

Feb 12, Brooke gets her power chair!

Premier Designs jewelry party raises $284.75 for FSMA.

March

March 2, Midwest Energy Cooperative features the story of Brielle and Brooke in their March issue of Country Lines Magazine

Thirty-One fundraiser raises $298.20 for FSMA

April

Eric completed flight surgeon school in Alabama.

Easter – Anizella the bunny.

April 17th - Brooke – RSV. 

May

May 7 – FSMA 5K Walk-N-Roll, Michigan Chapter. Lansing, MI Team Brooke and Brielle Raised $1713.00

May 8 –Local friend, Sydney Potjier, lost her battle to SMA.  :(

Memorial Day - Brielle’s first time fishing with Daddy  -catching a fish!

May 27 – Brielle’s last day of school.

June

June 9 – Brielle walking independently!

June  10th – Brooke’s first Hippotherapy session.

First trip to Disney World for FSMA Annual Conference.  The trip of a lifetime.

June 25th – Madagascar Hack fundraiser raises $299.00 for FSMA.

August-  “SMA Awareness Month”

Brielle turns 4!!

Brooke’s last clinical trail visit #8.

Applebees fundraiser rasied $273.44

Brooke and Brielle Art Auction rasied $1750.00

MI SMA Awareness Day Proclamation! Friends and Family in 5 other states!!!

Press release by Tonya Schuitmaker’s office on SMA Awareness Day in MI

Meeting with United States Congressman Fred Upton!

September

September 19 - 2nd Annual Rusty Rudder Golf Outing in North Carolina for FSMA in honor of Brooke and Brielle raises $4,000!

SMA Awareness in the State of Michigan - House Resolution No. 118.  A visit to the Michigan Capitol Building.

October

Brooke won a 268 pound pumpkin!

Halloween – Cowgirl Jessie and Cowboy Woody 

November 

Flower girls for Miss Kelly and another trip to Disney World!

Nov 22, 2011 – Brooke takes her first step!!

December

Brooke turns 3!!

On the cover of the Cheff Therapeutic Riding Center Newsletter!

Brooke and Brielle decorated a gingerbread house and visited the park to see the manger scene and Candy Cane Lane.  So much fun!

This was the first year Brooke was not afraid of Santa Claus! 

She was so excited to see him and wanted to give him hugs. 

Merry Christmas Everyone! 

Reader Comments (1)

What a wonderful, wonderful year! We hope 2012 is even better!!

December 20, 2011 | Unregistered CommenterKendra

PostPost a New Comment

Enter your information below to add a new comment.

My response is on my own website »
Author Email (optional):
Author URL (optional):
Post:
 
Some HTML allowed: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <code> <em> <i> <strike> <strong>