Fighting for a cure

mott blog - faith falzoneThis weekend, we attended the Griese, Hutchinson, Woodson “Champions for Children gala at the University of Michigan. It is a fundraiser for C.S. Mott Children’s Hospital and the Charles Woodson Clinical Research Fund. Last year, my daughter Faith was the guest of honor. She was there as a representative of the many children at Mott who have a disease for which there is no cure.

Last year she was given a pass by her doctors to leave the hospital for the evening to attend the gala.  She had just had most of her colon removed and she had to have another surgery before she was able to be discharged from the hospital. I remember being skeptical that it was a good idea for her to attend. Her doctors had to change her total parenteral nutrition schedule, and I was worried that she would get too tired.

The morning of the gala, however, Charles Woodson came to see her in the hospital.  That changed everything. I knew from that moment it was going to be a great night for her. She had an instant connection with Charles, and finally – after a few long weeks in the hospital – she was starting to act like herself.

As magical as the night was, I left that evening and went back to the hospital to face the reality that we deal with every day. Even though Faith had been invited to attend because of her disease, I remember wishing that night that Faith had a disease that wasn’t so rare. So that I could feel more hopeful for a cure for her.

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Hail to the Little Victors: Peter Bodkin’s Story

peter bodkin family

The Bodkin family: Sam Emily, Peter, Ben, Katherine

Our son, Peter, was born in Lansing, Michigan, on the evening of October 8, 2008 – healthy and happy after a normal pregnancy. Then, suddenly, when he was about 4 hours old, he turned blue. At 5 a.m., he was diagnosed with pulmonary atresia, a serious congenital heart defect.

We were transferred to C.S. Mott Children’s Hospital when Peter was just one day old, and six days later he underwent open heart surgery.

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Hail to the Little Victors: Darren Xiangzi Kreps’ Story

erik krepsWe first learned about Darren’s situation in March of 2012. He was three years old and living in an orphanage in Shenzhen City, China. He’d been found as an infant in a local hospital waiting room with a note presumably from his birth parents indicating his birth date and that “We hope the kind people can help him.”

It was discovered that he had multiple congenital heart defects.  They were able to diagnose the problems in his region of China but couldn’t treat them due to the complexities.   It was determined that he had a very short life expectancy without surgical intervention.

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Hail to the Little Victors: Colt DelVerne’s Story

colt delverneOur son Colt had been sick for a few weeks.  What doctors initially thought was migraines was getting worse – he was suffering from painful headaches and vomiting, and he seemed to be stumbling a lot.  We took him to our local emergency room, and what we learned there was beyond anything we’d imagined.  A CT scan identified a large tumor in his brain that was blocking his fourth ventricle.  Colt was diagnosed with a medulloblastoma, a fast-growing, high-grade tumor.  He was just four years old.

We were devastated.  We thought it was a death sentence for our little boy.

I remember the doctors sat us down and told us they needed to operate to remove the tumor the next day.  My husband and I looked at each other, and we knew we wouldn’t be comfortable having anyone other than the pediatric neurosurgeons at University of Michigan C.S. Mott Children’s Hospital caring for our little boy.

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For the heroes behind the heroes, Part 2

A mother's day message from a daughter, to all moms

mott blog - mother's day text imageThe role of a mother is simply irreplaceable to a child, and even more so when we find ourselves in the role of “patient.” At least that was the case for me during my illness.

Nearly 16 years ago, at the age of nine, I became ill with Lyme disease. It was a four to five year roller-coaster ride of doctors, tests, medications and constant “two steps forward and three back” scenarios.

My mom was with me through it all. She left her job to stay home and be my full-time caregiver during those years. For two years I was unable to walk, feed and care for myself in pretty much any way. My mom did whatever needed to help me survive. She got me up in the morning, made my meals, lifted me to and from my wheelchair, stretched out my muscles and much, much more.

She was the one who read verses to me to bring hope to my heart, prayed with me claiming healing, called friends to come over and bring joy to my heart, and pushed and encouraged me – even in tough love – to keep fighting and not give up.

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For the heroes behind the heroes, Part 1

A mother's day message from a mom, to all moms

Marianne and Mary Rose Takacs

Marianne and Mary Rose Takacs

Let me start off by saying, from one mom of a former patient to the moms of present day patients: I wish you a Mother’s Day that fills your heart with laughter and joy and all the good things it can hold, to carry you through your journey.

You hold a vital role in the life of your child, and of your family, and you are doing an excellent job!

You have an equally important responsibility, however, to “Take care of you.”

Before you dismiss the thought with an “I don’t have the time nor energy to take care of me,” response, let me share a little about how important you are and the necessity of taking time out, even for a bit, just for you.

Our family’s journey went on for five long years, with many ups and down, a whole lot of tears, exhaustion, fear at times, and definite frustrations along the way. It was only through accepting kind and generous offers to give me some relief and respite, that I found I was beyond depleted as I struggled to care for my child and family.

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