Apply to run on the BIA-MA Falmouth Road Race Team!

falmouth road race team 2014

Run as a member of the Brain Injury Association of Massachusetts official New Balance Falmouth Road Race team, and support brain injury. Apply now for a spot on BIA-MA’s team, and participate in the coveted and sold-out summer race.

About the race course: This beautiful, challenging seven-mile road race begins in Woods Hole and runs along scenic Cape Cod, ending at the beach in Falmouth Heights.

Each team member receives:

2015 Team Requirements: A $1,250 fundraising commitment by each Falmouth Road Race BIA-MA team member, guaranteed by credit card, is due on or before August 28, 2015 (You will be charged for any remaining balance the day after this commitment is due).

Additional information:

  • To learn more about the Falmouth Road Race,please visit falmouthroadrace.com
  • Runners who have secured their own race entries are welcome to join BIA-MA’s official team and receive these benefits. Contact the Development Office for more information.
  • Questions? We are here to help! Contact Us

Bittersweet – Mommy of a Miracle

Isabella got sick with sudden acute encephalitis on November 25th, 2010.  Before her Acquired Brain Injury (ABI), Isabella was an outgoing, happy-go-lucky, carefree little girl.  Right before starting preschool, her and I went to Build-a-Bear and made a stuffed animal, a Yorkie.  Together we recorded our favorite saying and put the “sound” into the stuffed dog.  Whenever we squeezed her paw we could hear us.

Over the last almost 4.5 years, I have seen this stuffed animal quite a lot.  The other day Isabella squeezed the paw and I remembered that we recorded a “sound”.  I am not really sure how I had forgotten that.  Listening to our voices, stopped me right in my tracks.  A flood of emotions overcame me.   It was bittersweet. It was sweet in the sense that she sounded so little and yet so innocent.  However it was hard to hear because it was before everything changed. It’s another reminder of how our life is defined as “before Isabella got sick” and “since she got sick”.  That one moment has become the divider that separates our life into two eras.

As I listened to the sound of our voices, I allowed myself for the first time to wonder what Isabella would have been like had she not gotten sick.  To be quite honest, I can’t even imagine who she would be.  When I tried to in vision that, my mind went completely blank.  I think it is because I have never allowed myself to go there.

The recording of our voices is similar to how I feel about the videos and pictures that I have of Isabella before she got sick.  The videos are of Isabella singing songs from preschool and just being silly.  It’s been almost 4.5 years and I still can’t watch them.  It is too hard and just thinking about them causes me to start tearing up.  Ironically, pictures are different.  I can look at baby pictures and be ok.  The closer the pictures get to the days and months leading up to “that day”, the harder it gets.  As much as I love it, it also is a painful reminder of what once was and now will never be.

As with many things, I find this journey to be bittersweet too.  Heartbreaking because Isabella has forever been changed by her ABI.  Her life is much harder than what it should be.  Isabella’s life is a constant battle of one step forward and three back.  Amazing because Isabella wasn’t supposed to make it and yet here she is defying the odds every step of the way.  She continues to inspire those around her as she fights to regain her life.  Throughout this journey I am continuously reminded just how truly blessed I am.  I love this Isabella more than life itself and I wouldn’t want to be anywhere else other than by her side.

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication. 

The Power of Support Groups “To the Memory of Nicholas Fox” – Mommy of a Miracle

“Dedicated To the Memory of Nicholas Fox”

I started a support group for parents of children with brain injuries almost two years ago.  I desperately needed that connection with others who could understand and relate to this journey.  There is a comfort that can only be found when another parent says “me too”.  On a journey where you often feel so alone and like no one “gets it”, it is nice to have one place where others can understand and help. Some of the things I have learned are:

  1. Support groups have helped me learn about services that I otherwise never would have heard about. Doctors will tell you about the physical therapy, occupational therapy and speech therapy, however, there are so many other options in addition to those. One service that I learned about through my support group was aquatics therapy. Once I researched it, I quickly found a place for Isabella to get “swimming therapy”. She made huge strides with this therapy.
  2. Support groups have taught me about alternative treatments that I otherwise never would have heard about. Prior to my support group I didn’t know about Omega 3s for brain health. I had never heard of taking B2 for migraines. I researched them both and then got approval from Isabella’s doctor. Both have helped her.
  3. Support groups have taught me about “ins and outs” of insurance. Let’s face it, insurance companies aren’t going to offer to pay for something if they don’t have to. Often time’s things like transport strollers, car seats, formula and other medical items can be covered by insurance. It is about knowing what to ask from medical providers and how to submit it to insurance.
  4. Support groups have taught me about financial resources that can help offset the cost of certain items that are not covered by insurance. Prior to my support group I didn’t know about scholarships, organizations, grants and projects that will help pay or provide a service needed. When I was raising money for Isabella’s Hyperbaric Oxygen Chamber, I connected with quite a few that were able to help meet our goal.
  5. The most important thing that support groups have taught me is that I am not alone on this journey. I have other parents who “get it”. I can ask questions and get opinions knowing their answers are from the heart because they too are walking this journey. Having someone else say “me too”, the power of those words I can’t even begin to explain.

There are so many kinds of support groups out there.  You can join one that you can physically go to or there are many online.  It’s important to find the right support group for you.  No two groups are alike.  If you find a good one group support, you will wonder how you ever made it on this journey without them.

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication. 

Enjoy the Moment – Mommy of a Miracle

A brain injury changes everything and everyone.  Isabella and I are both completely different people than before.  Isabella’s carefree, social, happy-go-lucky, outgoing personality has dramatically changed.  However, on this journey, I have been blessed with glimpses of “my Isabella” the person she was before her Acquired Brain Injury (ABI).  In these glimpses there is no brain injury – there is just Mommy and Isabella having an amazing moment.  I never know when or if another glimpse will happen, it could be in a few days, a few months or even longer.  I have learned to cherish these moments.  These are my reminder that Isabella is still in there and she is fighting like crazy to get out.

It is so easy to tell others to slow down and enjoy the moments, however, in my opinion you only grasp that concept if you have looked at the reality of losing it all.  Isabella is my life and my world.  I almost lost it all.  Each day that I wake up, I am blessed that I can get another day with her.

As Isabella gets ready to turn nine on February 23rd, I think back on how our life has changed so much in the course of the last nine years.  When your child is born you plan to enjoy and cherish every moment.  As time goes on, life steps in and the small things in life are often lost.  Then something tragic happens and it makes you stop and rethink everything.  As I sat in the pediatric intensive care unit (PICU) four years ago watching Isabella dying before my eyes, I made a promise. I promised that I would never take the small moments for granted it again.  I vowed that I would learn to truly live in the moment.

I encourage you to do the same.  Listen to the crickets, jump in puddles, laugh and be silly, watch the sunset, smell the flowers, catch snowflakes- enjoy the moments with your child.  You can’t ever get them back.  In an instant it can all change and never be the same.

“Enjoy the little things in life for one day you’ll look back and realize they were the big things” Anonymous

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication. 

World Encephalitis Day: February 22, 2015 – Mommy of a Miracle

As we approach the second annual World Encephalitis Day on February 22nd, I wanted to talk about the viral infection that left Isabella with an Acquired Brain Injury.  It was Thanksgiving Day, November 25th, 2010 when Isabella came down with sudden acute encephalitis.  At the time I had no idea what encephalitis was.  I remember hearing something on the news about mosquitos having it but that was the extent of my knowledge.  I quickly learned more than I could have ever imaged possible.  Encephalitis is inflammation in the brain usually as a result of an infection whether it is bacterial or viral.   According to the University of Maryland Medical Center 10,000-20,000 cases of encephalitis happen every year in the United States.  Like a brain injury, encephalitis does not discriminate.  It can happen to anyone, any age, any race, and at any time.

In minor cases of encephalitis the symptoms can mimic those of the flu.  These flu-like symptoms can be headache, fever, muscle aches and fatigue.   In major cases of encephalitis the symptoms are much more severe such as behavioral and personality changes, fever, headache, vomiting, lethargy, reduced or lost consciousness, disoriented, seizures, weakened muscles, light sensitivity, difficulty with speech vision or hearing, memory loss, coma and even death.  I initially brought Isabella to the emergency room because she was dehydrated from vomiting, she had a severe headache and she was confused/disoriented.  Within twenty four hours of being admitted, Isabella had a fever, seizures, increased vomiting, lethargy, light sensitivity, inconsolable pain from a headache and eventually she began to crash and die before my eyes.  Isabella became unresponsive, her sodium plummeted and her body started to shut down.

The key to surviving encephalitis is in seeking medical attention immediately upon the start of symptoms.  I was told had Isabella been at home she would have died.  Encephalitis can have many causes.  Some forms such as Eastern Equine Encephalitis, La Crosse Encephalitis, St Louis Encephalitis, West Nile Encephalitis are caused by viruses from insects such as mosquitoes.  Other forms of viral encephalitis include Herpes Simplex Virus, Varicella zoster virus, Epstein-Barr Virus, measles and mumps.  Sometimes encephalitis is caused by bacteria, fungus, parasites, toxins or autoimmune disease.  Proper diagnosis is essential in receiving appropriate treatment. Diagnosis is usually done through physical exam, CT scan, MRI, lumbar puncture, EEG and blood work.  Treatment varies depending on the type of encephalitis.  The source of Isabella’s encephalitis was never determined.  As a result Isabella was placed on antivirals, antibiotics and anything else that could possibly treat the encephalitis.  As tests ruled out potential causes, medications were discontinued.

Most people who have mild encephalitis, when treated appropriately have a great chance at fully recovering.  Those people like Isabella who are diagnosed with a severe case of encephalitis can have serious complications such as permanent damage to the brain.  Encephalitis led us on this journey to recovering from an ABI.  It is a miracle that Isabella survived.  As World Encephalitis Day approaches I encourage you to learn the symptoms and help raise awareness for this horrible condition.

#SHOWYOUKNOW #WED222

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication. 

Football – Mommy of a Miracle

I grew up in Patriot Nation, where football is life.  I have loved football for as long as I can remember.  With the Super Bowl approaching, I wanted to share how football has changed for me since Isabella’s Acquired Brain Injury (ABI).  Prior to Isabella’s ABI I didn’t even know what a concussion was let alone the aftermath of one.  Quite honestly I didn’t even know what a brain injury was.  It is embarrassing to admit that.

When Isabella got sick with sudden acute encephalitis, the reality of life with a brain injury was overwhelming.  That naïve view I had on football was forever changed.  The realization of what a concussion is (a brain injury) and what that means to someone’s life made it difficult to enjoy the sport I grew up loving.  Those hits in football that looked bad before now had a new meaning.  I now know with each hit to the head that lives can be changed.  That innocence I once had about football is now gone.

The first two years of Isabella’s ABI, I struggled with my love of football.  How could I love a sport that puts others at great risk?  How could I stomach watching hit after hit knowing that all it takes is just one to change a life?  What I came to realize is that we all take risks in life.  We take a risk when we play a sport, when we drive, when we go on a plane etc.  Some people chose to take greater risks.  While I may not always agree with the risks they take at the end of the day it is always their choice.

I still love the sport of football.  I have a new found respect for those that leave the game injured and stay on the sidelines.  I admire those that walk away from the sport they love because of their health.  I cringe when I hear a professional athlete brag about playing with concussions and/or purposely deceiving the system.  I wonder what message that sends to our children.  Some will call for an end to football.  I don’t think that is necessary.  I think ensuring the right rules and guide lines are in place is the key.   The hard part is making sure that they are followed.

How has sports changed for you since your experience with brain injury?

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

SAMSUNG CAMERA PICTURESLegal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication. 

Mommy of a Miracle – New Year

As a parent we tend to put ourselves on the backburner when it comes to our wants and/or needs.  As a parent to a child with a brain injury, we often don’t even make it on the stove never mind the back burner.  Each New Year, I make goals for our family and last year I decided that one of my goals would be to lose weight.  I decided that I was worth the $20/month to get healthy.  I had gained weight over the prior year and I had no idea how seeing as nothing had changed.  I joined a popular weight loss program.  I soon found out that if you eat really healthy (like we do) and you don’t eat enough it will cause you to gain weight.  What started out as a plan to lose weight, quickly became a life style change.

My challenge to you, the caregiver, in this New Year is to set a goal for you.  In our lives there are so many things in life that we are not able to change such as our loved one’s brain injury but there are just as many things that we can change if we try.  The point of the goal is to have it be attainable and something to better your life.   You are worth it.  Whatever “it” is.  We need to take care of ourselves so that we can in turn best take care of our child.

When determining the goal, keep in mind that it doesn’t have to be this big lofty goal.  Some ideas:

  1. Take 5 minutes to yourself. Whether it is drinking coffee before everyone is awake or simply just enjoying the moment of quiet.
  2. Improve your health. Whether it is losing/gaining weight, exercising or treating the health issue that you keep putting off. Your health matters just as much as your loved ones does.
  3. Do what you love. That hobby that you enjoyed before your child’s brain injury, it may be the perfect outlet for times of stress. Consider adding it back into your life in small spurts.
  4. Get out of the house for something other than doctor’s appointments, therapy, treatments etc.

Caregiving is a very selfless act that we do.  We are overworked, overtired, emotionally drained and yet we continue to take each day as it comes often with a smile.  Truth is none of us chose this life. In an instant it all changed and life as we knew it would never be the same.  Yet we do this job because we have to and personally, I wouldn’t want it any other way.  Along this journey it is very easy to lose sight of ourselves.  My hope for you is that this is the year that you start to put yourself back on the stove.

Happy New Year!

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.