2012 Families

In 2012, multiple families will travel to D.C. to participate in Family Advocacy Day and advocate on behalf of Boston Children’s Hospital. Here, we share their stories.

Read the blog archive from our 2012 families.

 

Leanna (Massachusetts)

Two years ago, Leanna was a happy teen in good health.  During her freshman year of high school, she became sick.  As the year went on her health deteriorated.  She was losing weight, sweating profusely and experiencing severe headaches. In February 2010, Leanna was rushed to Boston Children’s Hospital with dangerously high blood pressure. After many tests, doctors diagnosed her with an extremely rare type of tumor on her adrenal gland, called a pheochromocytoma. Leanna’s disease was advanced to the point that it would have soon been fatal.

For Leanna, the tumor caused heart problems, temporarily loss of vision, exhaustion, difficulty walking, high blood pressure, diabetic symptoms, among other things. She spent five weeks on bed rest at Boston Children’s Hospital and underwent an adrenalectomy. This was followed by a very difficult year of recovery and rehabilitation, as Leanna worked to build strength, walk unassisted and regain her health.

Now a junior in high school, Leanna has resumed playing ice hockey and golf.  She is an honors student, a volunteer member of the Teen Advisory Committee at Children’s and participates in drama and oceanography clubs.  Leanna feels so fortunate that she had access to life-saving care at Children’s.

 

Kyler (Vermont)

Kyler is 8 ½ years old and from East Calais, Vermont. He lives with his parents and his yellow lab Rudi. Kyler has Cerebral Palsy.

Kyler has an entire team at Boston Children’s Hospital.  He has known them since he was very young, just 2 – 3 years old. Kyler’s specialists work together to determine which treatments will keep him walking and doing all the activities that he loves. Kyler says that he doesn’t know where he’d be without them and the knowledge they have about Cerebral Palsy.

With the treatments Kyler receives at Boston Children’s Hospital, he is able to play sports, work outside with his Dad in the garden, work on the wood for next winter, camp in the backyard, and go hunting and fishing.  Kyler also likes to cook with his Mom.

Kyler’s hobbies include: swimming, horseback riding, cross country skiing, downhill skiing, baseball and of course, he is a Red Sox fan! He also plays on the local farm league team.

 

Nicholas (New Hampshire)

Nicholas is a most handsome 14 year old, whom some call a veteran of Boston Children’s Hospital.  He first arrived at Children’s by ambulance when he was just 12 hours old with oxygen levels below 70%.  Nicholas was born with Down Syndrome and a heart defect that required surgery at 3 ½ months. Complications from the first surgery led to an emergency heart surgery just one month later. During his first three years of life, he was diagnosed with many other health issues.  He currently sees a team of 12 specialists at Boston Children’s Hospital.

Nicholas is a wonderful soul with many endearing qualities. Despite six surgeries, more than nine endoscopies and Botox injections, countless other tests and procedures, lots of blood draws, tons of various therapies and finally, all the yucky medicine, he still loves to smile. Nicholas seems to always know just when to say “I love you” and melt your heart. He loves music, baseball, swimming, biking, bowling, eating at restaurants, and friends. But most of all, Nicholas loves to be with his family and his German Shepherd Ivan.

One Response

  1. Best wishes to you all! My family also traveled to Capitol Hill last year to represent Massachusetts and share our daughter Avery’s story.It was an incredible experience for the adults and kids. What you are doing is so important and I can tell by each of your own stories and experiences at Childrens – you will be wonderful in advocating the important messages for pediatric healthcare. Save travels and have FUN!
    The Toole Family (Cheryl, Mike and Avery Toole)

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