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.
Brielle turned 4 on Aug 3! She had a small celebration at home with our family on the night of her birthday and then her very first “big girl” party with a small group of her friends over the weekend.
The theme this year was Disney Princesses… of course! When I asked her which princess was her favorite she would answer with “Ariel” and then another day it would be “Cinderella”, then another day, “Sleeping Beauty” plus she would always give different answers to friends and family too. This made it hard for me, because I wanted to arrange for a “real” princess to come to her birthday party to sing and play games with her and her friends! After asking her at least 100 times, she seemed to say Sleeping Beauty the most, so that is the special princess who surprised her at her party.
Sleeping Beauty was amazing!!! She had the most beautiful voice when she sang and danced with the girls. She had a few games for them to play and even did face/hand paintings! The girls were all thrilled with Sleeping Beauty and couldn’t believe the real princess was there! It was adorable!!!!!
The best present was a special birthday message on DVD from Cinderella all the way from the Castle in DisneyWorld and her friends: Belle, Sleeping Beauty and Snow White! WOW!!
Cinderella also sent gifts for the birthday girl and included her little sister, Brooke, too. Brielle’s favorite presents from Cinderella were a huge lollipop, a minature REAL glass slipper and an Ariel doll. How did she know those were presents Brielle wanted so much? Brielle kept the little glass slipper close to her heart for the rest of the day! Cinderella sure does know all of Brooke and Brielle’s favorite things!
Brielle had a very special birthday week with lots of friends and family! She received so many cards in the mail, too! She enjoyed hearing what each one said. Thank you to everyone that helped make Brielle’s 4th birthday so memorable!
Happy Memorial Day everyone! We had a great long weekend! Friday started it off with Brielle’s last day of Preschool. Eric and I got to visit her classroom for the last hour and she was able to show us all of her favorite things that she works on. We loved being able to see her in her element and she was so proud show us how she can cut, color, match, sound out letters and pour liquids!
Sunday Brielle got to go fishing for the first time! It was just a small little pond at a friend’s house and all the kids were fishing. It was great because I think everyone caught a fish and for a few it was their first one they’ve ever caught so Brielle was excited to get as close as she could to the water and cast her line. Within seconds something pulled on the line and Brielle pulled back and all of a sudden the fishing pole broke in half!! Brielle was so brave she didn’t even let go and daddy rushed in to grab the other half of the pole so she could pull up that big bluegill fish! So here she is with the bigest fish caught that day and her very first fish!!
Monday we spent the day at our hometown parade and Brooke and Brielle thought the homecoming queens were Princesses so of course we had to get their picture taken with them and they were OH SO HAPPY! The weather was gorgeous and we had a great time spending it with friends.
Hope you had a great Memorial Day!
“Who kept the faith and fought the fight; The glory theirs, the duty ours.” -Wallace Bruce
We hope everyone had a great Easter Sunday with their familes and friends! Our weekend was great, we went on an egg hunt with friends on Saturday and church/Sunday school on Sunday followed by brunch with great friends and watched Robin Hood as a family before bedtime.
The girls found lots of candy and chocolate in their Easter baskets but they’re still not sure about the Easter bunny. All they care about is that live bunny they now have as a pet……. thanks to their dad. Well she/he (?) is pretty cute and very gentle little bunny rabbit. The bunny’s name is “Anazella.” Since Brooke has been sick, the only thing that makes her happy is watching the movie, Cinderella. The name Anazella is a mix of the two step-sister’s names, Anastasia and Drizella. Brielle came up with that all on her own, pretty clever! :)
Brielle admiring her Easter eggs she made at preschool.
Brooke admiring her Easter eggs too!
Easter egg hunt, there were 5,000 eggs!
Anazella the bunny gets lots of attention from Brielle and her neighborhood friends. :)
And finally our Easter pictures with a real bunny and baby chicks!
Friday, March 16, 2012 at 9:00PM 
We got a free photo shoot out of it and we are happy with every single one so we’ll let you know what they choose when it comes out! 
