Ladybug House Newsletter

March 2015

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It has been a long time coming, but we are officially here! We have initiated a quarterly newsletter to keep everyone informed about our progress toward creating Ladybug House, the first pediatric palliative care home in the Northwest. We hope this newsletter provides a platform in which our supporters can offer opinions and suggestions to help us create the best possible home-away-from-home for our beloved children and their families.

2014 was a year of progress and recognition for the Ladybug House project. Founder, Suzanne Gwynn, was invited to the first-ever, White House Maker Fair. This gave her an opportunity to meet other Makers, innovators and entrepreneurs working to make a difference in the lives of people today and for generations to come. Read more

Also, Suzanne was just honored with the ELNEC Award of Excellence in appreciation for her commitment to provide excellent palliative care in our community. Go Suzanne!

Dear Supporters,

Please allow me to give a bit of background to explain how the idea for Ladybug House came about. For those of you who may not be aware, I have been a nurse for more than 31 years and for 29 of those years I worked night shifts at the bedside of your families, your children.

In 1996 I began working in the Bone Marrow Transplant unit at Swedish Hospital. People came from all over the world for this groundbreaking treatment. These parents and caretakers had two things in common: a seriously ill child and no place to call home. They were alone. Many did not speak English, and they were here experiencing the unimaginable, caring for their sick child in a far away place.

This is where my dream to help these families began. I researched pediatric palliative care homes and discovered that only two existed in our entire continent: Canuck Place in Vancouver, B.C., and The George Mark House in San Leandro, California. I visited these homes and knew that just such a place was desperately needed in Seattle. However, I was a single mother working long hours and unable to make my dream a reality.

Time moved on and the Bone Marrow Program became the Seattle Cancer Care Alliance. Children were treated at Seattle Children's Hospital (SCH) where I spent my next 14 years. Although we stopped seeing as many families from around the world, we still treated many from around the country. Seattle prides itself on being a city with some of the best medical services in the country, yet families are still forced to separate due to distance, time and finances. Often, one parent remains back home and works to maintain insurance, a residence and some sanity for remaining family members. Palliative care is a remedy for this situation.

During those 14 years at SCH I witnessed countless families being dispersed. I watched nurses fold blankets to make sleeping pallets for siblings who were not allowed to spend the night. I witnessed nurses sneaking in puppies and kittens for a final farewell. I witnessed nurses helping teenagers plan the prom they would never attend or write an invitation list to their final farewell party. Palliative care addresses all of these needs directly.

When it comes to the end of life, families were trained to take their very sick children home, which is the only option other than the hospital. This remains the case. Although 80% of families want their children to die at home, only about 20% succeed because few families are able to provide the intensive care required. Families need help. Parents and caretakers are exhausted from providing 24/7 care with no respite. Palliative care helps parents and caregivers.

There continues to be no home hospices or skilled nursing facilities in the Northwest for children, adolescents and young adults. Furthermore, after all these years, there are still only two only on this continent.

In July 2013, I realized that if things were going to change I had to stop talking and start doing. From the moment I put pen to paper, I knew I was on the right path. People want to be part of something great and Ladybug House is it.

In October 2013, Molly Leonard joined me in the effort and Carly Andrews followed soon after. We have quickly added several more amazing individuals to our growing LBH family. Our everyday working crew may be a handful, but we are supported by a long list of people who are task-driven and willing to give 150% when needed. Read more about our amazing team

I believe with all of my heart that Seattle, our city that supports the 12's so enthusiastically, will embrace the Ladybug House mission and give a helping hand so that, "if we cannot add days to the life of a child we will add life to their days.” We need now to get the word out about the serious need for Ladybug House here in our community.

Your support is needed to make this vision a reality. Join us!

With love,

Suzanne Gwynn, Founder

WHAT IS PALLIATIVE CARE?

Palliative care for children is unique. It represents special treatment, often with different approaches and components than adult palliative care. Palliative care specifically directed towards children and their families includes the following:

Support and care that begins upon diagnosis and continues whether or not a child receives medical treatment for the disease itself.
The active complete care of the child, including physical, psychological and spiritual.
Consideration of the needs of family or caretakers by an interdisciplinary team.
Hospice care that focuses on end-of-life care and symptom management within a prognosis of six months or less.

In the United States there are currently only 2 palliative care homes for children: George Mark Children’s House in San Leandro, CA and Ryan House in Phoenix, AZ. In the United Kingdom there are 49 homes and our neighbors in Vancouver, BC just built their second home last year.

Our Purpose is to become the national palliative care leader for children and young adults with life-limiting illnesses, inspiring similar homes in cities and towns across our great country.

IN THE MEDIA...

Several publications and top NW press outlets have included Ladybug House as a cause to cover! Click on any link below to read what they have to say about us.

UPCOMING EVENTS...

Thursday, March 26:

Ladybug House’s first fundraiser will be held at Osteria Rigoletto in South Lake Union. Tickets are $50 each and include wine, hors d'oeuvre's, raffle ticket, and a silent auction offering fabulous prizes for winners. LBH is more than a good cause; it is a necessity. Please join us in the effort to give every child the ability to Celebrate Every Day. Buy tickets

BENEFICIARIES...

Saturday, March 28:

Kutting Edge Fitness in Kirkland is featuring Ladybug House for their "Saturday for a Cause" event. It will include a bootcamp style class and snacks, in which all proceeds go directly to LBH. Learn more

Saturday, April 25:

Ladybug House is proud to be the beneficiary of the Seattle Design Awards, produced by DList magazine and purehome on. Learn more

Sunday, August 23:

Ladybug House will also be the beneficiary of the Butterfly Run/Walk, started by the Children’s Hospice of America. Learn more

Saturday, May 9:

We are also the beneficiaries of the "5k Nightingale Run", hosted by the Student Community Affairs Committee (SCAC) of Seattle University. More details to come.

Follow us on Facebook for detailed updates on these events.

OUR WISHLIST...

The group seeks passionate professionals on our growing pro bono team. Please contact us if you are interested in filling one of these roles or know of likely candidates.

Project Manager
Director of Development
Web/IT Guru
Kinetic Typography Animator
Admin Support
Printing Services
Office Space/Room

The search is on for land – a place to call home! Assistance is greatly needed in this endeavor. If you have any leads or can offer help, please email info@ladybughouse.org

By Sandy Barker

I came to Seattle with our son Christian from California, along with my husband and two other children. The last week of our son’s life ended with my husband and I having to take turns spending the night at the hospital, while the other took our other two children back to the Ronald McDonald House. It was so hard because we all wanted to be together since we knew our time with Christian was nearing an end.

I would have loved to have had the Ladybug House available when our son’s life was nearing an end. Instead of having to endure the sterile, cold atmosphere of the hospital, it would have been such a blessing to have had Christian and our family be together in a homelike environment. The intense pain that is present when a family must watch a child/sibling pass away is indescribable.

I am certain that the Ladybug House will offer comfort to these families since they will all be allowed to be together and that is a priceless gift!

The LBH team wants to sincerely thank all involved for their time, ideas and encouragement. No matter how great or small, every action brings us closer to our goal. We initially wanted to list every single person who has supported us in some way, but then this would of been a ridiculously long newsletter. You know who you are and we thank you from the bottom of our hearts.