2012 Year In Review!

Merry Christmas!

Brielle turned 5 and Brooke 4 years old this year!

2012 seems to be a year of firsts for us!  

 Here are the firsts for our family:

• First sleep study
• Frist time bowling
• Brielle won a photo contest and was on the Cover of Kalamazoo Parent Magazine
• First time fishing
• Started aquatic therapy
• Brielle started Kindergarten
• Brooke had her first haircut
• Brielle donated her hair to Locks of Love
• First sleepover with friend, Evie H.
• Meritor Fundraiser for FSMA – Raised $2875 for FSMA
• Brielle got her ears pierced
• Our family went on our first hot air balloon ride
• B&B fed the dolphins at Sea World
• Eric went to Africa for an Army mission.
• August is declared SMA Awareness Month in the state of MI by Gov. Snyder
• Eric’s dad passed away
• Brooke had 3 stitches in her chin.
• Eric’s military promotion
• We visited our local fire department
• Our dog Mollie passed away
• We met the World’s tallest dog – Zeus
• Brooke was an Ipad grant recipient from the Gwendolyn Strong Foundation
• Our family was in a Commercial for Representative Fred Upton!
• and the best for last… Our family was picked to be the Grand Marshalls of the Disney World Dream come true parade!!  On the same day, Eric was chosen to be the Veteran of the Day at Magic Kingdom Park. 

The firsts for the The Friends of Brooke and Brielle Organization:

• The “flamingo flocking” fundraiser was held during the month of August to raise awareness for Spinal Muscular Atrophy.  It was a great success and we can’t wait to try it again next year! 

For the first time our friends have stepped in to help by selling their own goods to provide their profits to the Friends of Brooke and Brielle Organization!

• The Yummy Cupcake fundraiser held by Marianne
• I can and I will Inspirational Print created by Angi P.
• B&B SMA Awareness Bracelet created by Alex D.
• The sweetest little 5 year old, RaElla dedicated her birthday to raise money for her friends Brooke and Brielle.  
• The Gwendolyn Strong Foundation created a beautiful “I Can & I Will” tank inspired by Brooke and Brielle.

THANK YOU!!!!!!!!!!!

The firsts for Spinal Muscular Atrophy (SMA):

• We have also been involved with legislation called, “National Pediatric Research Network Act”
• Our family visited Senator Hagan’s office in North Carolina with our Aunt Christen to enlist support for the bill.
• Our family has visited our Representative, Congressman Fred Upton, many times to enlist his support for the bill.
• Dec 4 was a historic day for Spinal Muscular Atrophy.  The Recombinant DNA Advisory Committee (RAC) panel approved the gene therapy program so that it could move forward toward human clinical trials.  This is important step #1 in a 3 step process. 

What a great year!  We look forward to an even better year ahead in 2013!  

Thank you again for ALL OF YOUR SUPPORT!  

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 17^th - 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  10^th – Brooke’s first Hippotherapy session.

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

June 25^th – 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! 

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.

     

• Lowes Racing Magazine, “Betting on Brielle and Brooke”

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.

 

• Met Danica Patrick at Michigan International Speedway!

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!

Christmas Letter 2009

Brooke was born December 5, 2008 and our family was overjoyed with adding another little girl into our family but sad that Eric would be leaving at the end of the month to be deployed to Afghanistan.  Five days before Eric was deployed to Afghanistan we received devastating news that Brielle was diagnosed with Spinal Muscular Atrophy December 29, 2008.

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common “rare disorder”: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body – i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable.

Since SMA is a genetic disorder Brooke was also tested shortly after birth and after 4 weeks of waiting for blood results we were notified that Brooke will also suffer from this horrible disease.  Both girls have been diagnosed as being a type II.  We have since enrolled Brooke in the “Prospective Phase I/II Study to Evaluate Effects of Sodium Phenylbutyrate in Pre-symptomatic Infants with Spinal Muscular Atrophy” (or “STOP SMA”) study being conducted by Dr. Kathryn Swoboda at the University of Utah.  The study requires Brooke to be evaluated every three months for two years.  We have made 4 visits out to the University of Utah and every visit is a tough one because of all the invasive testing they have to do on her but we are happy to say that Brooke is not showing any symptoms of SMA yet and she is a really strong little girl who likes to crawl all over the place.

 

 EMG Study with Dr. Swoboda

 Our room at the hospital – Univ of Utah

         Brooke – PT test 

        

  Brooke – 11 months old

Currently there is no cure for this devastating disease but researchers are working hard to find one.  Since the beginning of the year we have made 2 trips to the Children’s Hospital Boston (CHB) SMA Clinic, 1 trip to the CHB SMA Day, 2 trips to the Shriner’s Hospital in Chicago, 1 trip to the Families of SMA Annual Conference, 4 trips to University of Utah, countless trips to the neurologist and pediatrician’s office and twice a week physical therapy appointments for Brielle and bi-weekly physical therapy sessions for Brooke and my favorite trip was re-visiting Punta Cana when Eric came home from Afghanistan. 

My dad passed away March 30, 2009 and that was a really hard thing for us to go through.  Eric was able to come home on emergency leave and could stay for 2 weeks.  It was so great that he could come home but it was so hard to say goodbye again.  My mom was able to RETIRE this year so she has been extremely helpful and we see her every day!

May 2 we participated in our first Families of SMA Walk-n-Roll for the Michigan chapter.  I’m proud to say we were able to raise over $10,000 for research to find a cure.  We had a great time and we got to meet some other SMA families in the state.

Brielle has acquired quite a bit of equipment in less than a year.  Currently she has a power wheelchair, manual wheelchair, power wheelstand (Standing Dani), gait trainer, 2 pairs of orthotics for her feet and an AmTryke tricycle.  All of these things make her life easier to get around and gives her the independence she craves.  Her power chair and standing dani can only be used at home because we need a 10’ ramp to get the chair in our vehicle and a 10’ ramp just isn’t portable!  We are hoping to purchase a converted van next spring so that Brielle can easily and comfortably go anywhere in her chair and it will save my back as she gets bigger because I can currently carry her around.  We are planning on doing a fundraiser in the spring to help with costs for the van conversion and medical equipment not covered by insurance for the girls.

       Power wheelchair            Power wheelstand           AmTryke Trycicle       

  Manual wheelchair (7lbs!)             Gait trainer

Eric was deployed to Kabul, Afghanistan January 3 for approximately 6 months; he treated the sick, wounded and critically injured soldiers and also was a mentor and advisor to the Afghanistan doctors.  He would also treat the local nationals, sometimes seeing as many as 500 local nationals a day with the help of another provider.  He also traveled to villages in need of medical support to provide medicine, milk and vitamins and also helped with security.

In his off time he volunteered for Operation Outreach (http://www.friendsofoperationoutreach.com/) to treat children with trauma, burns and bad infections.  The children had no winter coats, shoes, socks, and gloves for the winter so while he was there he asked friends and family to send whatever they could for the children.  The total amount of clothes, food and blankets that were sent during his tour totaled 1400 lbs. that were distributed to the Afghanistan people!!!  Eric was awarded the Meritorious Service Medal for all his accomplishments as well as the NATO Metal, Global War on Terrorism Medal, Afghanistan Campaign Medal, National Defense Service Medal and the Armed Forces Reserve Medal.  We are very proud of our hero. 

We couldn’t have made it through this past year without our wonderful friends and family, thank you for all of your prayers and support through this past year; we love you all very, very much!!  Hope you have a Wonderful Christmas and we are looking forward to a better year in 2010.

The Kennedy Family