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!

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Thursday
Jan132011

Year In Review - 2010

The year 2010 flew by and I wanted to take a minute to document all the amazing things that has happened for our family.

Brielle is now 3 years old and has a pretty full weekly schedule that keeps us moving all the time!  She attends preschool three days a week, physical therapy once a week at the hospital and once a week at home through our school district’s “early on” program, hippotherapy once a week and occupational therapy through the school district once a month!  She has been working on walking with her gait trainer and even taking steps independently with her KAFO’s (knee-ankle-foot-orthosis) and it is an amazing sight to see her doing this fantastic feat!  See her take some steps here.

Brooke is now 2 years old and is gaining strength and weight!  Last March she had a feeding tube placed, (you can read more about that here) and since then she has gained 5 pounds!  What a blessing!!  Brooke has weekly sessions to work on eating orally and has improved drastically since we started sessions with her last summer.  She is also walking with a gait trainer and continues to crawl and climb!  She loves to explore and get into trouble whenever she can!  She had her first session of Kindermusik this year and we have noticed a real appreciation for music from her.  She loves dancing to the music and moving around with the other children her age.  We feel that Kindermusik has opened up a new world of singing for her because she sings songs from class as well as her ABC’s and nighttime songs!  It’s so sweet to hear her little voice singing throughout the day.  Watch her sing here on Christmas day. :)

Here are all the other exciting happenings in our life, from a timeline perspective:

February -

Congressman Fred Upton (on the right)

Our congressman Fred Upton co-signed the SMA Treatment Acceleration Act! Thank you to all of our friends who sent letters with us urging him to be a co-sponsor of this important bill! 
  
 
May -

FSMA Michigan Chapter Walk-N-Roll 2010

  • We participated in the Michigan chapter FSMA Walk-N-Roll 
  • Casino Night Fundraiser in Charlotte, NC
    
         

 June -
  • Dinner and Auction Fundraiser in Richland, Michigan.
     
August -
  • Brielle turns 3! We had a SMA Awareness balloon launch. We attached Friends of Brielle and Brooke awareness cards to the balloons and released them!

Happy 3rd birthday Brielle!

  • SMA Awareness month, August 22 is declared Spinal Muscular Atrophy Awareness Day in MI.
  • At the request of the Honorable Carl Levin, United States Senator, this flag was flown for Brielle and Brooke Kennedy on the occasion of Spinal Muscular Atrophy Awareness Day.
 
September -
  • The Rusty Rudder golf tournament for Friends of Brielle and Brooke, gave proceeds to Families of SMA.
  • The Van Conversion is Complete!  It took approximately 6 weeks.
October -
  • Halloween!  Brielle was Cinderella and Brooke was Princess Belle.
November -
  • Brooke, clinical trial end.  Read about that here.
December -
  • Brooke turns 2! 


Happy 2nd birthday Brooke!



  • Merry Christmas!

Brielle & Brooke with Santa! 

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