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Love for Leah

On this Thanksgiving week, I have many things to be thankful for, my wonderful husband, a great family, and a good job.  After writing so many stories of grief and loss on my blog, I am thankful to be blessed with two wonderful and healthy children.  I am also thankful that so many people have turned their grief into an organization to help others.  Today’s organization is just one example.

Jenny and Marc Fujinami found out they were pregnant on May 21, 2011.  They were excited and nervous just as any new parents would be.  At just 13 weeks along, they learned that there was something wrong.  Nothing was certain except that their baby girl would have a birth defect.  At 18 weeks, they learned that she had Hypoplastic Left Heart Syndrome (HLHS) and a Diagrammatic Hernia and were given a 1% chance that she would survive.  They named the baby Leah and continued to hope for a miracle.  Jenny tells the rest of their heart wrenching story better than I ever could.

The sad truth is that 1 in 160 pregnant women will experience stillbirth and 1 in 4 pregnancies will end in miscarriage, stillbirth or other tragic events shortly after birth.  After her experience, Jenny knew that more should be offered to families experiencing infant loss.  She partnered with Carolyn, the photographer and Now I Lay Me Down to Sleep volunteer who captured photographs of Leah’s birth, to create Love for Leah.

Love for Leah

Love for Leah is an organization that donates Love for Leah Bags to families in Cheyenne, Wyoming who are experiencing the loss of an infant while at the hospital.  The bags include items to capture memories, books to offer advice, and a list of resources, support and helpful organizations.  You can see a full list of the items included as well as a photo on their website.

How can you help?

  • You can make a monetary donation or inquire about items you can donate.  You can learn more about making a donation on their website.
  • You can also share the story and share all the great resources they have collected with others who may benefit from them.
  • If you live in the Cheyenne, Wyoming area you can watch for promotional events or memorial events sponsored by Love for Leah.
  • Love for Leah also seeks volunteers to help with fundraisers, bag assembly, and helping spread the word at vendor fairs and other events.  You can contact them at loveforleah@gmail.com to volunteer.

You can learn more about Love for Leah on their website, Love4Leah.com and on Facebook.

Related posts: Now I Lay Me Down to Sleep, Mikayla’s Grace, and Project Sweet Peas 

 
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Posted by on November 20, 2012 in Nonprofit Organization

 

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Open Heart Magic

Open Heart Magic

“And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic will never find it.”   ~Roald Dahl

Young children are surrounded by magic.  Magic beans and carpets in fairy tales or the magic hug from a parent that can make things all better.  However, for kids in the hospital, they may stop believing in magic because their parent cannot just make it better.  Today’s organization is bringing magic to kids in the hospital. 

In November of 2003, Mike Walton was a commodities trader who decided to become a volunteer at Rush Children’s Hospital in Chicago, Illinois.  He performed close-up, slight-of-hand magic for patients.  Soon he realized that magic offered the perfect vehicle to help kids by getting them involved with an interaction that excited and interested them.  Mike developed techniques to harness the excitement associated with magic to help kids heal and feel better.  Each trick allowed the kids to learn new skills and rediscover their sense of fun and laughter.  The kids also conquered feelings of sadness, fear, and isolation that are common during a stay in the hospital.  These are all things that help the children heal. 

After some encouragement from hospital staff, patients, and patient families, Mike launched Open Heart Magic with a mission to use the therapeutic power of magic and laughter to energize and strengthen seriously ill children in Chicago area hospitals and to aid their healing.  They strive to reach young patients one-by-one regardless of their disease, medical situation, or physical ability so that all children may benefit from this engaging and entertaining therapy. 

With the launch of Open Heart Magic, Mike trained the first set of volunteer Hospital Magicians.  These volunteers had no background in magic, but were interested in helping kids in hospitals.  He took them through a 12 week course which is now the basis of the Introductory Training at the OHM Magic University.  In 2004, Open Heart Magic became an officially registered 501c3 nonprofit organization.

The organization excels as engaging kids that have been difficult to reach and those who may not be able to participate in other activities due to their physical or medical restrictions.  They recently launched a new magic program that allows them to even visit those children staying in isolation to protect them from infection.  They are able to visit these children who are restricted from most visitors to show them the transforming power of magic, laughter, and joy.  

How can you help?
Open Heart Magic has several opportunities to help their cause.

  • You can volunteer as a Hospital Magician.  You can find the volunteer application on their website.
  • Run on the Miles for Magic Charity Running Team in the Chicago Marathon, Half Marathon or other race or personal challenge.  You can learn more about their Miles for Magic program at MilesForMagic.org
  • You can also join the Open Heart Magic Professional Board to help promote awareness of the organization and serve as a catalyst for their growth.   You can contact Ryan Walsh at rwalsh@eastdilsecured.com to learn more about this opportunity. 
  • You can also make a donation through the Open Heart Magic website. 

You can learn more about Open Heart Magic on their website, www.openheartmagic.org.  You can also connect with them on Facebook and Twitter.

Related Posts: Sweet Dreams for Kids, Camp Get-A-Well-A, and The Monday Life

 
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Posted by on November 1, 2012 in Nonprofit Organization

 

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The Monday Life

The Monday Life

Mondays have a bad reputation.  It is the sign for many of us that the weekend is over and we have to go back to school or work.  Today’s organization might just change your mind about Monday by giving you something to look forward to on your Monday.

On Christmas Eve 2009, Joey McMahon’s grandfather passed away.  Joey was living in New York at the time and working a job he enjoyed, but the passing of his grandfather reignited a desire to do something to help people.  Joey moved back to North Carolina and started working on an organization in honor of his grandfather. 

The Monday Life uses the concept of crowd-funding to get as many people involved as possible.  The organization asks donors for $1 each Monday to raise funds to support their mission of helping hospitalized children feel better and heal faster by improving their patient environments.  They raise money to fill children’s hospitals with art, light, color, music, technology, massage, games, animals and fun.  They are a 501c3 nonprofit based in Chapel Hill, North Carolina and partnered with six hospitals around the United States: Children’s Hospital of Philadelphia, Seattle Children’s, Children’s Hospital Colorado, UNC Children’s Hospital, Duke Children’s Hospital, and Miami Children’s Hospital.  

The goal of The Monday Life is to spread awareness and get as many people involved as possible. They also wanted to make sure that anyone can help.  One dollar is reasonable for almost anyone to give toward the cause.  One dollar isn’t the upper limit, some choose to donate more. 

The organization’s website lists some scientific research on each type of environment improvement that they promote.  For example, art therapy offers a distraction from pain and illness, reduce stress, provide coping skills, and offer social benefits.  The article refers to recent data suggesting that art therapy programs may result in shorter hospital stays, less need for medication, and fewer complications for patients.  Music therapy can also serve as a distraction as well as reduce pain and anxiety, and provide emotional support and comfort.

Recently, the organization started allowing hospitals who they have not officially partnered with to set up their own fundraising sites that target a particular need such as adding an art or music therapist, purchasing iPads, or other items to improve the environment for patients.   They are also working with new technology to let patients in hospitals interact with each other via tablets, smartphones, and social media sites to help provide social support and entertainment.

How can you help?

  • The easiest way to get involved is to setup a reoccurring donation through their website.
  • You can also designate your reoccurring donation toward a specific partner hospital here.
  • You can even setup a fundraising page to help fundraise for any hospital that is in your area.  The Monday Life will set everything up and help with promotion, they just need approval from the hospital.

You can learn more about The Monday Life on their website, themondaylife.org/.  You can also connect with them on Facebook and Twitter or sign up for the weekly e-mails.

Related Posts: Camp Get-A-Well-A, Kid Flicks, and Sweet Dreams for Kids

 
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Posted by on October 30, 2012 in Nonprofit Organization

 

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Now I Lay Me Down to Sleep

Photographers get to share in the most special times in the lives of families.  Weddings, family portrait sessions, maternity photos, and other special events fill their typical sample galleries.  However, a network of professional photographers have come together to share in a time of grief and to create cherish memories.

The Now I Lay Me Down To Sleep (NILMDTS) organization has a mission to introduce remembrance photography to parents suffering the loss of a baby with the free gift of professional portraiture.  These images serve as an important step in the family’s process of grief by honoring their child’s legacy. 

In February 2005, Maddux Achilles Haggard was born with a condition called myotyular myopathy that prevented him from breathing, swallowing, or moving on his own.  At just six days old, his parents had to make the excruciating decision to take him off life support.  Before they did, they called photographer Sandy Puc’to take black and white portraits of them cradling their son.  Puc’ photographed Maddux with his parents, before and after being removed from life support, including photos where he was free from the tubes and wires that sustained his short life. 

Maddux’s mom, Cheryl Haggard said, “That night was the worst night of my life.  But when I look at the images, that’s not what I’m reminded of.  I’m reminded of the beauty and blessings he brought.  Those tender photographs documenting Maddux’s eternal connection with his parents inspired Cheryl Haggard and Sandy Puc’ to found a nonprofit organization that has provided thousands of families of babies who are stillborn or are at risk of dying as newborns with free professional portraits with their baby.

The organization is based in Centennial, Colorado, but they have volunteer over 12,000 photographers across the United States as well as forty countries worldwide. 

This feature from 2008 on the NBC Today Show is a touching view into a NILMDTS session:

How can you help?

  • Photographers can learn more and apply to be a volunteer photographer or photo retoucher via the organization’s website
  • If you work in or with a hospital, you can NILMDTS to make the hospital staff aware of the program, download a guide for hospital staff, request brochures, and find training options on the organization’s website.
  • If you know of a family who may need the services of a NILMDTS photographer, you can direct them to the organization’s website and click “Find a Photographer”.
  • Individuals can also volunteer as area coordinators or volunteer to help the existing area coordinators in your area.  To find nearby area coordinators, you can go to the Find a Photographer section of the website and enter your zip code.
  • Monetary donations can also be accepted via the organization’s website.

You can read stories of some of the families touched by the NILMDTS organization on the website, however, I will warn you that some of the stories are hard to read.

You can learn more about the Now I Lay Me Down to Sleep organization on their website, www.nowilaymedowntosleep.org.  You can also follow NILMDTS on Facebook, Twitter, and YouTube

Related Posts: Mikayla’s Grace, Ella’s Halo, and Project Sweet Peas

 
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Posted by on June 27, 2012 in Nonprofit Organization

 

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Mikayla’s Grace

Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.   ~ Walter Anderson

 

Many organizations are born from a loss or struggle.  Today’s organization is one that was founded after one of the most difficult struggles: the loss of a child.

Mikayla’s Grace was founded by Mike and Melissa Terrill in February of 2011.  They were inspired to create the organization after they experienced the premature birth and death of their second child, Mikayla Grace.  After Mikayla’s short 36 hour life, they felt the need to give back to other parents in similar situations.  While they did have support while they were in the hospital, they felt a lot more could be done.  They did not want other parents to leave the hospital with regrets of things they should have done while they did have their child with them.  They also wanted to ensure other parents had the resources they needed to continue on the journey of grieving the loss of their child.

The organization’s mission is to support families with a baby in the NICU and those who experience the death of an infant at hospitals in the Madison, Wisconsin area.  They provide NICU care packages and angel memory boxes that offer both practical and emotional support for the parents.

Mikayla’s Grace is the first organization of its kind in the Madison, Wisconsin area.  While hospitals sometimes get donations of handmade baby blankets and hats, they have not had an organization that plans to consistently donate.  The items in the care packages and angel memory boxes are also unique.  The care packages include a camera, a NICU specific scrapbook, journal, baby items, toiletries, and resources for preemie parents.  The angel memory boxes include hand and foot molds, keepsake envelope for hair, a special burial gown, other keepsakes, and resources for grieving parents.  So far, they have donated over 100 angel memory boxes and 100 NICU care packages in addition to many other items to support these families.  

In addition, they hosted the first ever Forever in Our Hearts Remembrance Day in October 2011.  This event brought together over 150 people who came to remember all babies who were gone too soon.  The event is planned again for October 13, 2012; you can read more about it at www.foreverinourheartsmadison.com.

Mikayla’s Grace also has an extensive list of resources for parents, friends, and family of those grieving the loss of an infant child. 

How can you help?

  • The organization has an Amazon wish list to make donations to the care packages and angel memory boxes simple.  Place an order and the items will ship directly to the organization.
  • They also need volunteers, auction donations, and sponsors for their Forever in Our Hearts Remembrance Day in October.  Go to www.foreverinourheartsmadison.com to watch for details on this event.
  • Monetary donations also help because each memory box costs about $50 and each care package about $60.  Donations can be made on the organization’s website.
  • Handmade blankets are also accepted.  You can learn more on the donation page of their website.
  • Those near Madison, Wisconsin can also volunteer for one of their assembly days when they put together kits to be donated to the hospital. 
  • You can also check out the organization’s online auction here.

To learn more about Mikayla’s Grace, you can visit their website, www.mikaylasgrace.com.  You can also read the family’s full story for each of their children here.  You can also connect with them on Facebook, Twitter, or via e-mail.

Related Posts: Ella’s Halo and Project Sweet Peas

 
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Posted by on June 13, 2012 in Nonprofit Organization

 

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Camp Odayin

Imagine not wanting to go to summer camp because you didn’t want to have to explain the scar on your chest from heart surgery or a parent being too scared to send their child off to camp because they would be too far from medical care.  This is what the families of children with heart disease had to think about before Camp Odayin came along.

Camp Odayin provides safe, fun and supportive camp experiences and community building opportunities for young people with heart disease and their families. 

Sara Meslow knew about heart disease.  At just 13 years old, she was diagnosed with supra ventricular tachycardia which caused abnormal electrical impulses sometimes made her heart to beat wildly.  She grew up to be an elementary school social worker and volunteered for several summers at a camp for young heart patients in California.  Sara’s mother suggested that she start one of these camps in Minnesota and Camp Odayin was born.  

The camp was formed in 2001.  Odayin means “heart” in Ojibway.  The goal is to make the camp an ordinary camp so the kids don’t have to feel like a heart patient. 

The main office is located in Stillwater, Minnesota but their camp programs are held around the area.  They have a resident camp in Crosslake, Minnesota; a day camp in St. Paul, Minnesota; and a winter camp and family camp in Amery, Wisconsin. 

The only cost to campers is a $25 registration fee per person to attend.  The actual costs are between $100 and $600 per child depending on the program.  The additional funds are contributed by generous donors and four annual fundraising events.  They also utilize an all-volunteer staff, including highly trained pediatric cardiac nurses and physicians, in addition to the camp counselors and program directors. 

The resident camp is for children with heart disease between 8 and 17 years of age, the day camp is for children with heart disease that are 6 and 7 years of age, and the family camp is for families with a child with heart disease.  All camps are for children who would benefit from connecting with other young people who may share similar health, emotional, and social concerns.  Camper eligibility is determined upon recommendation by a pediatric cardiologist and approval by the Camp Odayin Medical Director.

The organization hosts three annual fundraisers.  The Heart & Sole Fun Run/Walk features a beautiful 5K run and 2.5K walk at Como Park in Saint Paul, Minnesota in September.  The Whole Heart Golf Tournament is an annual event in June at the Indian Hills Golf Club in Stillwater, Minnesota.    The Have a Heart Benefit is a music event held each winter.  You can learn about these fundraising events on the organizations website.  These fundraisers return about 93% to their campers.

How can you help?

  • Each summer over 120 volunteers are needed as counselors, nurses, and cardiologists.  Camp counselors stay in the cabins with 7 to 9 campers.  Each cabin is also staffed by a nurse who administers medication and monitors the health of the campers.  You can learn more and apply for these positions here.
  • The organization also utilizes volunteers who serve on event planning committees and provide office support.  You can learn more and apply for these positions here.
  • You can purchase Camp Odayin logo clothing on their website.
  • You can also make a monetary donation using the “Donate Here” button on the organization’s website.

You can learn more about Camp Odayin at their website, www.campodayin.org.  You can also connect with them via e-mail, Facebook, or Twitter.

 
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Posted by on May 31, 2012 in Nonprofit Organization

 

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Project Sweet Peas

One thing that ties most of the Blogunteer posts together is a story of a passion that drove someone to start an organization.  Today I write about three women whose stories had a common bond that brought them together to form one organization.

Stephanie Olivarez gave birth to her daughter, Shelby Grace in July 2006.  Shelby was born with a life threatening birth defect known as Congenital Diaphragmatic Hernia (CDH).  Shelby fought for her life in the neonatal intensive care unit (NICU) and has endured several surgeries since she was only nine days old.  Shelby has three older sisters that have served as an asset to her recovery.

Corin Nava gave birth to her son Gabriel in November 2006.  Gabriel presented serious complications immediately after his birth and was whisked to the NICU.  Corin was told that her son had the devastating birth defect CDH.  In January 2007, Gabriel lost his fight to CDH.  Corin went on to have three more children, one of which needed NICU care. 

Kate Crawford gave birth to her daughter Shannon in January 2007 with CDH and was later diagnosed with Hypoplastuc Left Heart Syndrome.  The combination had a 1% chance survival rate and she died in her mother’s arms at just two days old.  Kate went on to have three other children who were all premature and spent weeks in the NICU. 

These three mothers came together through an online support group where they found comfort and support.  They knew there was something they wanted to do to help families so they started filling gift bags with items they needed or wished they had during their stay in the hospital.  Project Sweet Peas was born.

The organization’s headquarters is in Pennsylvania, but there are divisions and affiliates in 18 states and Canada.  Their mission is to provide comfort to families who have critically ill children in the intensive care unit or families who experience the unfortunate loss of a child by providing care packages and memory boxes.

The strain felt by families during a stay in the NICU result in a great deal of sadness, depression, and most of all, stress.  Often families find themselves in the NICU unprepared; without the basic necessities or any simple comforts of home.  The parents are consumed by a focus on the health and survival of their newborn.  In some cases, the hospital staff can provide some comfort, but that is not always the case since their focus is providing the best medical care to the baby.  

One source of sadness is the inability for the parents to hold or bond with their new baby.  Anything that promotes closeness, touch, and other positive interactions promotes attachment with serves to keep the infant close to its mother and improve the child’s chances of survival.   

Project Sweet Peas works with hospitals to provide families with the basic necessities and comfort items through care packages.  These customized kits could contain toiletries, gift cards for food, or gas to help cover the costs of frequent trips between home and hospital.  In addition, notebooks, journals, and resources to help families keep track of progress and stay informed are provided.  Books and toys can be included to help entertain siblings.  Blankets, hats, booties, decorations for the baby’s bed, scrapbook materials, hand and foot molds or print kits, and disposable cameras could also be provided to help parents build precious memories.  When needed, bereavement memory boxes are provided to help families collect treasured mementos to remember their baby who passed away.  Since their founding in 2009, over 4,000 care packages have been delivered. 

How can you help?

  • Project Sweet Peas allows parents to start divisions of their organization in honor or memory of their own children.  Each division has been touched by a child who spent time in the intensive care unit or has passed away.  You can find all the divisions along with the story behind their creation here.
  • You can donate handmade items such as booties, hats and blankets to a local project.  Learn more and find patterns here.
  • You can find fundraisers and events hosted by the various divisions of Project Sweet Peas on their website.
  • Tax deductible monetary donations can be made via PayPal on their website.
  • You can share the variety of resources for NICU families, find stories from other NICU families, or send a care package/memory package to a family via the Project Sweet Peas website.

You can learn more about Project Sweet Peas on their website, ProjectSweetPeas.com.  You can also follow their blog, follow them on Facebook, or connect with them via e-mail.

 
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Posted by on May 22, 2012 in Nonprofit Organization

 

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