Thursday, July 28, 2016

Hearts of Bergen - Chloe Fernandez




Meet Chloe,

Diagnosed at age 6 with a severe breathing and lung disorder known as PCD – Chloe Fernandez, now 9, of Ridgewood spent most of the next three years going in and out of the hospital dealing with this rare genetic condition.

PCD, or primary ciliary dyskinesia, is an inherited disorder that prevents the lining of the lungs, or cilia, from removing mucus and foreign material that enters the lungs through the airways and often leads to restricted breathing or severe difficulties with breathing.

During those three years of hospitalizations, at her mom’s urging, she kept a journal of her thoughts, feelings, dreams, and hopes. Although she is a student now in fourth grade in Ridgewood’s Somerville School, much of the last few years have been spent being home-schooled and away from her peers to reduce her exposure to germs.

To see what other kids were going through who had PCD, Chloe and her mom, Leslie, searched through the children’s hospital library at Hackensack University Medical Center looking for a book that could help her to know what to expect and how to manage the condition.

Both came up empty-handed, surprised that nothing was available. Then Chloe had an idea: She could write a book for children with PCD and help them. A few years before, Chloe had been inspired by an author who visited her school and talked about writing and books.

With the help of Make-A-Wish New Jersey, Chloe became the first-ever Make-A-Wish recipient to write a book. Titled “PCD Has Nothing On Me,” the 47-page illustrated book chronicles Chloe’s young journey through diagnosis, treatment, and hospitalizations in 13 chapters such as “Mommy, Why Me?” “No Playdates,” “Swimming Will Help,” and “Fancy Without Perfume.”

Her introduction includes four pages of thanks and appreciation to her doctors, nurses, medical staff, Make-A-Wish, teachers, friends, family and dog, Abby. “This book is dedicated to all the kids with chronic illness: Stay strong, stay positive, keep the faith and never stop believing in miracles,” she writes.

Following surgery last year, Chloe is on a regimen of seven medications, including steroids and antibiotics, a “mostly” vegan diet, and uses a nebulizer and airway clearance vest to help her breathe.

She recently did two book signings: in June at Barnes & Noble in Paramus and in July at Little Skye Children’s Boutique in Ridgewood. She said that Make-A-Wish surprised her before the Barnes & Noble book signing by providing a white stretch limousine to chauffer her to the event. It was the first time she rode in a limousine. She said almost 100 people were at the event and 60 books were sold.

Chloe equally splits all proceeds from her book sales to Make-A-Wish New Jersey, and Josephine’s Garden at the HUMC Children’s Hospital. She spent hours enjoying the garden as a pediatric patient and wants her book to “give back” to both organizations, and especially the children’s garden.

“That place was very special to me … I forgot about my IVs, and my worries when I was up there,” said Chloe. The garden was named after another pediatric patient, Josephine Rispoli, who, with her mother Heidi, dreamed of a garden for children at the hospital. Though Josephine succumbed to a malignant brain tumor in 2011, Josephine’s Garden opened at HUMC in 2012.

Chloe said that a book signing is anticipated at HUMC’s solarium in August or September.

For now, Chloe said that she is “feeling good” and enjoying the summer. She said it’s been “about a year” since she was last hospitalized for her condition. Upon mom’s advice, she said she is following a vegan diet except for an infrequent bacon and eggs breakfast. The vegan diet – basically a no meat, eggs and dairy diet - helps reduce build-up of mucus in her lungs.

In addition, her doctor advised her to take up swimming and she herself has joined a harmonica-playing group that meets Wednesdays at Holy Name Hospital. She also plays piano. Both swimming and harmonica-playing boost lung capacity and help assist lung function. Chloe said she plays and swims weekly to help her lungs.

In 2015, Chloe and her mom participated in Bergen Volunteer Center’s “All Wrapped Up” holiday giving program and learned about the many activities that volunteers perform daily throughout the county. She said she wanted to do something to support the center and its work.Chloe has decided to donate 100% of the proceeds of her book to the Bergen Volunteer Center now through the end of the year when the book is purchased through this link for the BVC to get create. Purchase PCD Has Nothing On Me today

In addition to being an author, Chloe has modeled and been featured in Ultra Style and Talent Magazine. “I’m very, very stylish,” she said with a smile. Currently she has another book in the works, and her mom, who monitors her social media accounts, said she has a few hundred Twitter and Instagram followers.

“I think it takes braveness and strongness to volunteer. Stay strong and stay awesome,” wrote Chloe in a copy of her book she donated to BVC’s library.



By Michael Olohan, BVC Volunteer



Wednesday, July 27, 2016

Expert Exchange Series - Will You Wait A Moment?

FREE WEBINAR!
Wednesday, August 17 
1:00 - 2:00 PM 

Bergen Volunteer Center is offering a variety of free live webinars on various topics. These one-hour online sessions are for anyone who wants to continually learn or get more information on a topic. While they are FREE, you do need to register to participate. Click here to register.

August's panel is about learning how the practice of Mindfulness can create space to transform from an over-reactive frame of mind to one of non judgement and peaceful awareness. In today's fast-paced, technology laden world, learning how to take a moment, offers boundless rewards. Experience how simple techniques can become a daily practice to open the mind to imagination, awareness, compassion and transparency that will ultimately benefit you, your organization, customers, shareholders and community. Come join 2WallStreetChicks in this interactive webinar that will lead you to more joy and balance in your life.

At the end of the webinar participants will know: 
  • What is Mindfulness and why it's critical in today's constantly changing world. 
  • Why Mindfulness will make you a better leader and person, and some practical strategies to have in your leadership toolkit. 
  • How Mindfulness strengthens your ability to be Resilient.
 All sessions will be recorded and can be accessed at www.bergenvolunteers.org. To view our previous Expert Exchange webinars click here.

Wednesday, July 20, 2016

Resolution 2016

The following towns in Bergen County have passed a proclamation in Honor of Bergen Volunteer Center’s 50th Anniversary. These towns include Alpine, Bogota, Cliffside Park, Closter, Cresskill, Demarest, Edgewater, Fort Lee, Hillsdale, Ho Ho Kus, Little Ferry, Norwood, Park Ridge, Ramsey, Ridgefield, Ridgefield Park, Ridgewood, Rutherford, Saddle River, Tenafly, Upper Saddle River, and Woodcliff Lake. More towns have put this resolution in their agenda and Bergen Volunteer Center is expected to receive them by November of 2016.

 Bergen Volunteer Center has been a champion of volunteerism, community service and civic engagement. It’s commitment to community engagement is longstanding, dating back to 1966 when it was established to meet community needs through the  power of volunteers. It’s direct service programs organize volunteers to provide invaluable support to some of Bergen’s County’s most vulnerable citizens.

Today, Bergen Volunteer Center is addressing critical challenges ranging from at risk youth, overwhelmed moms, and seniors. The Mentoring Youth program has recruited, trained and supervised volunteer mentors for children who have been abused or neglected. Since 1978 Mentoring Youth has provided a trusted mentor to more than 3,700 children. The Mentoring Moms program recruits, trains and supervises mentors for mothers whose children are at-risk for abuse or neglect. Since 1995 more than 500 mothers have been matched with a mentor. The Chore Service provides home safety repairs for senior citizens and the disabled free of charge through the volunteer efforts of senior citizens. The Business Volunteer Council organizes corporations to help eliminate hunger and illiteracy.


This resolution demonstrates the power of volunteerism in promoting community and civic engagement and promulgating the idea that at 50, Bergen Volunteer Center is not getting old; it is just getting started.

Hearts of Bergen- Ashley

Meet Ashley,
Ashley started her gold award (the highest achievement for a girl scout) in 2015. She began working with the Bergen Volunteer Center and the Bergen County Bureau of Veterans Affairs on a project to serve the homeless and low-income veterans in Bergen County. Working with Debbie Emery Director of Community Engagement, she set up the event called The Veterans Resource Fair, which took place on April 20, 2016. Ashley, with the help of corporate and community volunteers, distributed toiletries and clothing items donated by individuals and companies from our area. Ashley said that looking back, she did not think the veterans would have such a profound impact on her. For her, it was a life changing experience to connect and talk to these veterans. Ahsley said, “The best thing was the joy on their faces after receiving what they needed. Each and every veteran I talked to had a different perspective and outlook on life. Each of their stories was incredible and important to hear.”

Hearts of Bergen- Rita

Meet Rita,
Rita has volunteered at the Bergen Volunteer Center and Hackensack University Medical Center as a way of giving back her time to assist others in need. She says “ I have gained much experience and knowledge over the years in various areas and disciplines and I am pleased to share that with many”. Rita started volunteering years ago while planning for retirement. It makes her feel useful.
For Rita being a part of the Bergen Volunteer Center's Mentoring Moms program and spending time with moms who need a helping hand, encouraging words and validation that they are cared for, is the best part of it all. At Celebrate Volunteers back in March, Rita received a certificate of recognition from the Mentoring Moms program and the Bergen Volunteer Center as they celebrated volunteers.

Hearts of Bergen- Chris

Meet Chris,

Chris started volunteering when he was 13 years old at many different places. It all started when he needed service hours for confirmation. He liked it so much, he continued to volunteer. He volunteers for his local soccer club, food banks and clothing drops. Volunteering makes him feel good about helping others. He says that when volunteering with a big group, it’s really fun. Helping others makes him feels good about himself. He is proud to be a contributing member of society. For Chris, volunteering makes him feel fortunate. When he was in high school, he received an award as a part of a leadership program.
‪#‎heartsofbergen‬