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A Family’s Fight for a Cure for Duchenne Muscular Dystrophy (DMD)

Thursday, January 30th, 2014

It had been almost a full-year of medical appointments—six, to be exact—she had been called a “neurotic mother,” had booked private sessions with a physical therapist (whose goals still remained unmet) and Dayna Scarso had finally gotten an answer. A pediatric neurologist diagnosed her 3-year-old son Pietro with Duchenne Muscular Dystrophy.

“At first, I wanted to strangle the doctor. How could you just diagnose my son like that?” explains Dayna. “You know immediately your dreams and hopes and visions are shattered on the spot.”

Duchenne Muscular Dystrophy (DMD) is not only the most common, but also the most severe form of MD. DMD affects approximately one out of every 3,500 male births worldwide, (and, more rarely, can affect girls) who cannot produce dystrophin, a protein necessary for muscle strength and function. As a result, the skeletal muscles in the body gradually deteriorate over time. While two-thirds of DMD cases have a family story of the disease, Pietro is among the one-third who have no such history and are due to spontaneous mutations.

Dayna first recognized that something was just not right when Pietro was nearing 3 years old while on a play date. “The other kids were much faster. Pietro was very labored going up and down the steps. He wasn’t able to stand from the middle of the floor. Instead, he’d have to crawl to a couch or a chair to pull himself up.” Children with DMD are often late walkers who may seem clumsy and fall regularly. When they do, kids with DMD have a distinct way, referred to as the Gowers’ maneuver, of going from sitting to standing by using their hands and arms to pull themselves up, which is due to the challenge presented by weakened leg muscles.

Children with Duchenne typically show symptoms between ages 3 and 5, and are usually wheelchair-bound by age 12. Until recently, those living with DMD faced a life expectancy of their late teens or early 20s. However today, due to advances in respiratory and cardiac care, DMD patients more and more are living into their early 30s with some living well into their 40s and 50s. Many go to college, have careers, marry, and have children.

After the initial shock of the diagnosis, Dayna started reaching out to a network of DMD nonprofits and organizations. She quickly felt a connection with mothers looking to keep their sons as strong as they can, for as long as they possibly can. Dayna wanted their regimens, their secrets. She wanted a cure.

“I started asking, ‘Your son is 18 and he’s not in a wheelchair. What do you give him?’” says Dayna. It didn’t take long for her and her husband Manni to found their own nonprofit, Pietro’s Fight.

“I would physically give my own arm or leg to make my son feel better. But I can’t,” says Dayna. “The only thing I can do is raise awareness and raise funds for research.” To date, Pietro’s Fight has raised almost $350,000 in fundraising, with every penny going towards research for a cure.

Today, Pietro takes a daily concoction of extra supplements and vitamins to promote heart and lung health. He receives steroids, a commonly prescribed medication for DMD patients, and also uses an at-home vector machine. Pietro calls this his “muscle machine,” which helps blood flow to his weakening heart and muscles.

While there is no cure for DMD, researchers are currently looking into a multitude of approaches to halt or reverse muscle damage. From stem cell research to gene repair, there are several studies and tests that offer hope for children like Pietro. One experimental drug, eteplirsen, looks encouraging in its clinical trials and Pietro’s Fight, along with a network of fellow organizations under the Duchenne Alliance, have worked tirelessly to fund its research for the chance that it may change the course of the future.

But it is in between the countless hours of pooling resources for a fundraiser, schlepping to doctor appointments from New York to Baltimore, or researching the latest scientific breakthroughs that the Scarso family truly finds their strength. “Time is what this disease holds from you. It requires you to prioritize being a mom, being a wife, being a sister—you’re a victim of DMD,” says Dayna. “But it’s impossible in this day and age not to know how to fix it.”

Duchenne Muscular Dystrophy: Pietro's Fight
Duchenne Muscular Dystrophy: Pietro's Fight
Duchenne Muscular Dystrophy: Pietro's Fight

Visit PietrosFight.org for more information on the Scarsos and Duchenne Muscular Dystrophy.

 If you’re in the New York area, join Pietro’s Fight March 20th at Fight Night Round II: Pietro vs. DMD for an adult seated dinner, dance and silent auction to benefit the fight for a cure. For tickets or sponsorship opportunities email Dayna@Pietrosfight.org.

Image and video courtesy of Pietro’s Fight.

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A New Year, A New Definition of Family

Wednesday, January 1st, 2014

ShutterstockBeing single and childless isn’t the hardest part of working at Parents. Rather, my most challenging obstacle is my unconventional upbringing. I was raised by a single mother. As a child, I didn’t notice being different from everyone else. My mom and I have always shared a unique, special relationship. Every Tuesday night we watched Gilmore Girls together, and to this day I can’t make a decision without calling my mom for approval at least twice. Doubt me? I once left Ikea empty-handed because I couldn’t get cell service in the comforter section. Despite my wonderful, if fatherless, childhood, I find it difficult to get into the mind of our readers, who I’ve always assumed have a bit more testosterone in their household to balance things out. 

But perhaps I’ve been wrong about that. For as I recently recognized after reading this recent New York Times article, my nontraditional family dynamic turns out not to be all that unconventional after all.

I’m far from alone in being raised by a single mother. In 2011, 36 percent of mothers who gave birth were unmarried and 44 percent of single mothers had never been married at all. Mothers are increasingly becoming breadwinners. Forty percent of households with children under 18 include moms who are either the sole or primary source of income for the family, compared to just 11 percent of households in 1960. What about dads? A record 8 percent of households with children are headed by a single father today, a number that has increased ninefold since the 60s.

The current generation of young adults illustrates a vastly changing view in social norms. Seventy-two percent of adults 18 to 29 prefer a dual-income marriage, where the husband and wife both work and share household and childrearing responsibilities.

And the very definition of marriage has changed. Same-sex marriage is now legal in 16 states, and there are more than 100,000 same-sex couples raising children in this country. Their kids have proven to be academically and emotionally indistinguishable from those of heterosexual parents. As Natalie Angier put it, “In increasing numbers, blacks marry whites, atheists marry Baptists, men marry men and women women, Democrats marry Republicans and start talk shows.”

Pop culture is mirroring that shift. The sitcom TV series Modern Family includes two gay fathers raising their Vietnamese adopted daughter. The show has received four consecutive Emmy awards for “Outstanding Comedy Series.” Change the channel and you’ll find Mom, where Anna Faris plays a single mom in Napa Valley. And as pop culture is invariably a reflection of social change, there’s clearly more than entertaining television shows playing out before us.

So on New Years Day, as we clink, cheer, and kiss those nearest and dearest into 2014, let’s also embrace the new definition of family. No one household is, or needs to be, the same as the next. If I’ve learned anything from my days at Parents, it’s the importance of loving and valuing your family, whatever the makeup and however it’s defined. This year, my resolution is to do just that.

Read more on the changing American family and stay up-to-date on parenting news with our daily newsletter.

Image: Mother hugging daughter via Shutterstock.

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How To Teach Your Child Resilience: Tips & Strategies from Sesame Workshop

Thursday, December 19th, 2013

Resiliency. It’s learning from that mistake at school or dealing with rivalry between siblings. It’s seen when a child resolves a problem with a friend or when she copes with moving to a new town. Resiliency is your child’s ability to cope with and overcome challenges, whether it’s a day-to-day obstacle or a major transition. It’s the power within your little one to understand her feelings and solve her problems, no matter how big or small. And your child’s resiliency starts with you.

But resiliency is a tough concept for kids to grasp, which is why the Sesame Workshop launched its Little Children, Big Challenges initiative to teach skills and strategies to young children—and the adults who support them—it’s designed so they can persevere through any challenge. The Sesame Street Workshop has been committed to empowering parents and children for 40 years, and their latest installment provides the tools to build important resilience skills, enabling young children to grow and thrive.

Head over to SesameStreet.org/Challenges and you’ll get access to all the fun, engaging tools and activities for you and your child. And they’re all free.

Kids can sing along to the “Bye Bye For Now Song” or play the What We Are Music Maker! game to help your child think of words to describe herself. There are activities for everyday scenarios, like drawing pictures of your morning routine, and meaningful life events, like drawing leaves on Elmo’s “new things” tree. The Sesame Street DVD features a Muppet story and music videos of real children and families. And the Breathe, Think, Do with Sesame app helps children problem-solve anywhere from any tablet or smartphone device.

For parents and caregivers, the Family Guide provides tips and strategies that you can start using today to help build your child’s confidence. The resource specifically gives advice for teaching your tot persistence, patience, dealing with mean or aggressive behavior, as well as a variety of other circumstances.

Resilience is not only innate. Children can also learn problem-solving skills. Ultimately, one of the most important factors is the presence of a caring and supportive adult, which is where you come in. The Sesame Workshop’s Little Children, Big Challenges gives you and your child the tools to cope with whatever obstacles­—big or small—come your way.

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Photo credit: ©2013 Sesame Workshop. All rights reserved.

 

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