After months of poking and prodding, we received Brielle’s devastating diagnosis of Spinal Muscular Atrophy Type II at 16 months of age and her Doctor told us there was no treatment or cure for this devastating disease. However, we have found otherwise and there is promising research taking place now that we are follow daily online.
Brielle was accepted as part of a compassionate study through the University of Utah SMA Research Center aimed at arresting symptoms and assisting in rebuilding strength. This study requires her to take potent and highly toxic medications several times a day. While the risks of this treatment are great, she has shown huge improvement in muscle strength and respiratory function since beginning the regimen in June of 2009.
In addition to her medications and routine checkups, Brielle also endures:
• Physical Therapy:
- Daily home exercises focusing on building and maintaining muscle strength.
- Hippotherapy at the Cheff Center twice a week.
- Aquatic therapy twice a week at Agility Health.
- Early On at home therapy weekly.
• Occupational Therapy – Periodic check-in with Early On; focusing on fine motor strength and keeping an eye on her hand tremors.
• Blood is drawn regularly to monitor the medication levels and organ function from the trial medications.
• Travel to Children’s Hospital Boston SMA Clinic and The University of Utah for once-a-year evaluations.
She has already faced many challenges in her short life, but meets each new hurdle with her favorite saying, “I Can and I Will!” Brielle makes friends easily and is very social. She has become a problem-solver in learning how to do things, i.e. getting dressed. She has learned how to sound out words and can read beginner reader books.
Thursday, February 28, 2013 at 9:25AM 
Rare Disease Day is an important reminder about the need to address the unmet needs of people living with rare diseases. Dedicated funding for earlier diagnosis, more basic research to understand disease mechanisms, as well as applied drug development will lead to faster treatments for rare diseases, including Spinal Muscular Atrophy.
Wednesday, February 6, 2013 at 11:42AM Brielle was invited out to try adaptive skiing for the first time! She did great and loved every minute of it! We feel so thankful for the volunteers who make amazing opportunities like this happen for people with special needs! (You have to be at least 5 years old so Brooke watched from the lodge this time)
Here’s how Brielle gets on the chair lift:
Sunday, November 11, 2012 at 4:06PM Eric was asked to be the guest speaker at the annual Paw Paw Veterans Day ceremony held Sunday, Nov. 11 at Veterans’ Park, Paw Paw, MI.
Eric did a great job delivering his speech and Brielle had the honor of saying the Pledge of Allegiance for the crowd. She did it perfectly and there weren’t many dry eyes at the end. What an incredible little girl we have, we are so proud of her.
Thank you to all of the Veterans out there who have served and those who are are still serving today.
“Freedom is never free.” -Author Unknown
The Kennedy Family
Eric delivering his speech
American Legion Firing Squad
Eric and Brielle
Brielle saying the Pledge of Allegiance
Monday, October 15, 2012 at 8:55AM 
Brielle is the Super Star of her Kindergarten class this week! She's pretty excited about all of the special things she will get to do in the classroom and share about her life!
Wednesday, October 10, 2012 at 10:58AM 
“I pledge allegiance to the flag of the United States of America…”
Brielle had the honor of holding the flag in her Kindergarten class on Sept 11, 2012!