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 follow daily online. 

In 2009, 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 and stretches focusing on building and maintaining muscle strength.
                    - Hippotherapy weekly.
                    - Aquatic therapy weekly.
                    - School therapy weekly.

• Occupational Therapy – Periodic check-in; 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 become independent, i.e. getting dressed, brushing her teeth, getting her own snacks.  She loves to read, swim and anything Disney related!

Rare Disease Day

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.

Brielle Goes Skiing For The First Time!

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:

 

Happy Veterans Day!

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

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The Kennedy Family

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Eric delivering his speech

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American Legion Firing Squad

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Eric and Brielle

Brielle saying the Pledge of Allegiance

Kindergarten!!!

Brielle started Kindergarten this year at our local public school!  She has been so excited ever since she turned 5 to go to “big girl school.”  The school district gave plenty of opportunities to visit and be involved before the actual first day.  Brielle participated in everything there was (and Brooke too in some of the activities) so when the first day rolled around, she was READY to go!

 

She found her locker at Kindergarten orientation!

Here she is beaming with excitement on her first day!

and here she is - first day on the BUS!  Wow! 

She even got a special message from the Disney Princesses for her first day!  So special!!!!!!  

It was all a big success and this week starts full days every day this week.  Hope we can all handle it!  :)

 

Brielle Cuts 13" Of Her Hair For "Locks Of Love"

 

 Check out the article our local newspaper did on Brielle! 

Little girl sets aside own struggles to give to other children facing challenges

 

Posted: Monday, August 20, 2012 10:35 am

MATTAWAN - After three earlier times to get her hair trimmed, a Mattawan youngster Monday afternoon re-ceived her first “big haircut,” this time donating 13 inches of her golden curls to “Locks of Love.”

Brielle Kennedy, who recently turned five, went to Renee’s Nails, 51797 CR 652, Mattawan, for that special cut. She made the trip with her mother, Sarah, and younger sister, Brooke, age three.

Under the skillful hands of stylist Jessica Jenkins, Ken-nedy sat up straight in the chair, without flinching, while Jenkins gathered up her locks and put them into two pony tails, prior to cutting them off.

“She always wanted to grow it out,” said Sarah.

When Brielle was 16-months old, Sarah and her husband, Eric, received devastating news that Brielle was diagnosed with Spinal Muscular Atrophy (SMA) Type II.

Doctors told the Kennedys there was no treatment or cure for the disease, but the Kennedys remain optimistic and are encouraged by research currently being done.

According to Sarah, 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.

The study requires Brielle to take potent and highly toxic medications several times daily.

According to Sarah, while the risks of this treatment are great, Brielle has shown huge improvement in muscle strength and respiratory function since beginning the study in June of 2009.

Brielle also takes part in physical therapy that includes:

• Daily home exercises focusing on building and maintaining muscle strength.

• Hippotherapy at the Cheff Center, in Augusta, 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.

Sarah said that blood is drawn from Brielle regularly to monitor the medication levels and organ function from the trial medications. They also travel to Children’s Hospital Boston SMA Clinic and The University of Utah for once-a-year evaluations.

Sarah said Brielle has already faced many challenges in her short life, but meets each new hurdle with her favorite saying, “I Can and I Will!”

The Kennedys have three friends who are facing childhood cancer. “It hits close to home,” said Sarah.

As the degenerative disease has taken away Brielle’s muscle strength, it didn’t take away her ability to grow her curly hair,” said Sarah. “She wanted to help other children who have been diagnosed with cancer.”

This fall, Brielle will begin kindergarten at Mattawan Early Elementary School.

With the help of State Senator Tonya Schuitmaker and State Representative Aric Nesbitt, Gov. Rick Snyder proclaimed August as “Spinal Muscular Atrophy Awareness Month.”

It has an extra special meaning for the Kennedys, whose youngest daughter, Brooke, was diagnosed with SMA one month after her birth.

Brooke was admitted into a clinical “single key-drug therapy” study being conducted by the University Of Utah School Of Medicine. The study is funded by FightSMA and led by Dr. Kathryn Swoboda. The study is called the “Prospective Phase I/II Study to Evaluate Effects of Sodium Phenylbutyrate in Pre-symptomatic Infants with Spinal Muscular Atrophy” or “STOP SMA.”

Sarah said that by beginning treatment pre-symptomatic, Dr. Swoboda is setting out to prove that the earlier treatment begins, the greater the potential benefit in delaying onset and ultimately lessening severity of SMA symptoms.

At age two, Brooke did not show the signs of deterioration her sister experienced at this same stage. Sarah said she was crawling extensively, pulling to stand and walking with a gait trainer.

Starting around 12 months of age, Sarah said Brooke’s greatest challenge was her inability to gain weight.

As is often the case with experimental treatments in small children and infants, it is believed her medication, so apparently successful at delaying onset of SMA symptoms, may indeed have been the culprit for these complications, according to Sarah.

At 15 months of age, she weighed only 15 pounds and her doctors determined it was critical to abandon her current study medication regimen and start her on the same path as her sister.

Brooke’s inability to gain weight resulted in emergency laparoscopic nissen fundoplication surgery and insertion of a gastrostomy tube (G-tube). They are both doing a lot of physical therapy. They are trying real hard to preserve the muscle they have now,” said Sarah.

The two girls travel twice a week to the Cheff Center, where they do stretching, reaching and balancing exercises on a horse while it is in motion.

Sarah said her daughters, despite their setbacks, keep an upbeat spirit as they continue their medical challenges.

 

Happy 5th Birthday Brielle!!!!

Brielle turned the big 5 years old this month!  A whole hand!  Wow, where did the time go!?

She had a really fun movie themed birthday party.  We had a big blow up movie screen set up in our back yard.  Friends and family came over and braved the heat to celebrate Brielle’s big day and thankfully the rain held off until the following day!  

Brielle chose to watch the movie “Sleeping Beauty - Once Upon A Dream” on the big screen.  She couldn’t wait for it to get dark so she could watch it with her friends and enjoy handfulls of popcorn a a big selection of candy and “fizzy pop!”  

The movie was a huge hit and it was so much fun!!  Brielle said her favorite part was when she got to the party and everyone was waiting for her and they excitedly shouted, “Happy Birthday Brielle” when she came in the backyard!

 Thank you to everyone who came and made this birthday one that she will never forget!  

 

Central Florida Bride Magazine featured Kelly and Brandon’s beautiful wedding!

Brooke and Brielle were flowergirls in their wedding and Brielle made it in one of the magazine’s pictures!

 

Central Florida Bride Magazine featured our lovely bride Kelly and her husband Brandon!
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Kevin Keelan Photography
Bridal gown by The Collection
Central Florida Bride and Kevin Keelan Photography.

 

 


Kalamazoo Parent Cover Photo Contest Winner!!

Kalamazoo Parent Magazine had a contest to find the cutest kid for the cover. And this beauty won:

We are so excited!  Brielle will be on the cover of the May issue of Kalamazoo Parent Magazine!

We are not sure what image they are leaning toward but I hear it might be this one…

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! 

Happy 4th Birthday Brielle!

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!

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

Happy Easter!!

We hope everyone had a great Easter Sunday with their families 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!  :) 

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 Brielle admiring her Easter eggs she made at preschool.

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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.  :)

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And finally our Easter pictures with a real bunny and baby chicks!

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Part Of That Woooooorld!

One of Brielle’s favorite movies is the Little Mermaid and she’s memorized most of the songs but this is one of her favorites!

I think it’s the sweetest thing and can’t believe I actually got this on video. :)