Ronald McDonald House Charities® of Eastern Wisconsin, Inc.
Volume 4 | Issue 2 Fall 2020
HOMEWORD
Sisters make the best of friends! In this issue: GROWING COMPASSIONATE CARE IN THE NEW YEAR • PAGE 2 65 NIGHTS, INFINITE LOVE • PAGE 4 PROVIDING A SAFE HAVEN DURING SAFER AT HOME ORDERS • PAGE 7
Bailey loves being big sister to twins Brielle & Braelyn.
Growing Compassionate Care in the New Year Although sometimes it has been hard to find light at the end of the dark COVID tunnel, we are excited to share a couple of ways our RMHC® Chapter will shine a light on our mission, expand our reach over the next 20 months and provide compassionate care to even more families who need us. Our House is honored to partner with Rogers Behavioral Health in a new way. Although Roger’s families have been calling our House “home” throughout the past decade, the 25 miles separating our House and the Roger’s Oconomowoc campus can make for very long days for families traveling back and forth. We knew we could provide compassionate care at another level and, in October, Rogers broke ground on the Rogers’ Ladish Center, which will include a Ronald McDonald Family Room® Program. Our organization is one of the first within the RMHC Global Charity system to exclusively provide support to families with patients receiving treatment at a behavioral health hospital. The Family Room will provide programs, hospitality and respite to Roger’s families. With an expected opening in fall of 2021, there will be many ways you can help support the Family Room Program in the coming months. In addition to our new Family Room Program, we are also planning another House expansion. Before COVID disrupted our lives, our Ronald McDonald House® was almost always full. There were waitlists nearly every night and there were times when we could not accommodate every family who needed us. Last Fall, we began preparing for another expansion so that we could serve the growing number of families who need our support. The plans include additional public gathering spaces, an indoor playroom, much-needed meeting and storage space and, best of all, 14 comfortable and spacious long term family guest rooms. Construction is planned for spring of 2021 with a completion date the following spring of 2022. We look to 2021 with optimism and hope as we expand our reach and keep more families together as we promote the health and well-being of children.
Ann Petrie, President/CEO
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www.RMHC-EasternWI.org
Keeping Our Doors Open and Families Together y first year as Board Chair has certainly been interesting with its share of challenges associated with the COVID-19 pandemic and social justice issues facing our country. While the pandemic has put much of the world on pause, serious illnesses affecting children and their families never take a break. Amid business closures and safer at home orders, I am proud that our Ronald McDonald House® has remained open, providing comfort and compassionate care to families who need us.
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Our Leadership Team and Board of Directors have worked together since March to implement additional protocols that focus on the health and safety of everyone who enters our House. Working with our hospital partners, new guidelines were established to qualify family stays, resulting in our census dropping to 50-60 percent of our normal capacity. This means that each day, approximately 35-42 families count on us to provide them with support and compassionate care. As our volunteer and Family Meal programs were suspended in mid-March, staff stepped up without hesitation to do whatever was necessary to keep the House clean, our pantries well-stocked and our families supported. To give you some perspective, there are normally 40 volunteers providing support to the House each day. At present, there are 7-9 volunteers in the House each day – quite a difference! Although our Family Meal program continues to be on hold, an outpouring of financial support from the community has allowed us to cater in individually portioned meals for our families several times a week from area restaurants that have supported us so generously over the years. I would like to personally thank all of our volunteers, donors and friends for remembering our families in their time of need. Through it all, I am filled with gratitude for our generous community, the support of my fellow Board Directors, and the dedication and nimbleness of the RMHC® staff. No matter the challenge, this team always puts our mission ahead of everything else. I am honored to serve this organization which has proven, time and time again, that keeping families together comes first.
Todd Jones, Chairman of the Board
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65 Nights ♥ Infinite Love
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ith 37 weeks considered a term pregnancy for twins, Kristyn Allen was ready to welcome her daughters into the world at 38 weeks. Braelyn and Brielle joined mom, dad Greg, and big sister Bailey on December 21, 2018. Kristyn had an easy delivery and both twins seemed healthy. Braelyn, “Twin A,” weighed seven pounds, three ounces and Brielle weighed five pounds, ten ounces. Every baby is different, but it wasn’t long before Kristyn noticed little things about Braelyn. Her breathing seemed a bit unusual. She seemed to take a long time to drink a bottle and never drank as much as Brielle did. At about three weeks old, Braelyn became very ill. Her pediatrician discovered a heart murmur. Braelyn was referred to a pediatric cardiologist and was diagnosed with a ventricular septal defect (VSD) – a small hole in the wall that separates the two pumping chambers of her heart. Her blood oxygen level was also very low. She was diagnosed with Coronavirus and hospitalized in Green Bay for 10 days. Two weeks later, Braelyn was struck with respiratory syncytial virus (RSV), a very contagious virus that infects the respiratory tract that causes cold-like symptoms in adults and healthy children,
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but can cause serious problems in babies. Kristyn took Braelyn to the emergency room, where she was immediately admitted and quickly put on a ventilator. The following night, Kristyn brought Brielle in with the same symptoms. Braelyn’s condition worsened – likely because the hole in her heart deterred circulation – and the maximum settings on her ventilator were not enough to oxygenate her blood. Her medical team recommended that she be transported to Children’s Wisconsin (CW) for extracorporeal membrane oxygenation (ECMO), a treatment that pumps blood outside of the body to a heart-lung machine and removes carbon dioxide before rewarming it and sending it back to the body. ECMO is very specialized and requires 24/7 monitoring by specialized nurses. Not everyone is a good candidate and with high potential for complications, there is a 50/50 chance of survival for babies. Braelyn needed to make the 120-mile journey from Green Bay to Milwaukee, with Kristyn following close behind. The critical care fellow overseeing the CW transport told Kristyn that surviving the trip would be the hardest thing Braelyn would do that day. Kristyn describes the two-hour drive as an out of body experience. Each time she saw brake lights flash her heart stopped, as she assumed the worst. Greg was informed by a hospital social worker in Green Bay that she would make arrangements
www.RMHC-EasternWI.org for Kristyn to stay at our Ronald McDonald House®. A room was available and a few hours after arriving at CW, Braelyn’s condition was stable enough for Kristyn to make her way over to the House. Having no idea what to expect, Kristyn was amazed by the “clean, modern and pretty” home she walked into. From the Hospitality Bag welcoming her to her room, to the House programs that meant she did not need to worry about where or what she would eat, Kristyn was embraced by the compassionate care of the people that make our Ronald McDonald House a home. About three days into Braelyn’s ECMO treatment, while crossing the skywalk from RMHC® to CW, Kristyn received a phone call – the specialists had discovered a bleed in Braelyn’s brain. She instantly wondered whether this was the end. What would Braelyn’s quality of life become? And the most difficult question of all: would they need to remove her from life support? The first person to join Kristyn at the hospital was her dad. They waited in silence as the doctors ran tests. He was there when the neurosurgeon reported that it appeared that Braelyn would recover with minimal, if any, repercussions. Shortly after Braelyn’s transport to CW, Brielle joined her twin sister, not because she required elevated treatment, but to provide ease of care to the family.
Braelyn received ECMO treatment for 13 days and ventilator support for six weeks. When Brielle was released from CW, the family was moved to a long term room at the House with enough space to care for the entire family. Greg recalls the medical journey as hectic, rewarding and saddening, all rolled into one. It was hectic to keep up with Bailey, tend to Brielle and fulfill his duties as a freelance sports journalist during a particularly active time of year. It was rewarding, though, to be able to provide for the girls and keep Bailey’s mind off of what Braelyn was facing while Mom was away. It was saddening to not be by Braelyn and Kristyn’s side to offer love and support. “I know it was a difficult time for Kristyn to be with Braelyn, but our little girl was in great hands with Kristyn and the Children’s staff,” says Greg. Kristyn and her family spent 65 nights at our House. Today, Braelyn is making great strides – to see her interacting with twin, Brielle, and older sister, Bailey – she has demonstrated little delay in fine and growth motor skills. As far as her neurosurgeons and neurologists can tell, it’s not expected that her brain bleed will have a major impact on her health. In March, Braelyn underwent a successful surgery to repair the hole in her heart. The family is hopeful that this is one of the final steps in Braelyn’s medical journey.
From father/daughter-bonding over authentic Italian dinners made with love by volunteers, to the way Bailey’s face lit up when the Magic Room door opened to her for the first time, Kristyn’s family made meaningful memories at our Ronald McDonald House. Every morning, Kristyn’s dad always made sure she had a cold Mountain Dew and she could always find him pushing Brielle’s stroller with a hot “cup of joe” from the Green Room. When he passed away last year, Kristyn found many letters from RMHC thanking him for donations that she didn’t know he had made. The family plans to bring coffee to the House for his birthday each year. Kristyn sums it up best: “To me, RMHC is the ultimate sense of peace, comfort and hope when you’re going through a difficult time with a child who is critically ill. To go through a truly traumatic time, probably the worst time of your life, and be able to look back and say that you have happy memories or that you laughed makes no sense but RMHC does that. It sounds crazy but it’s true and that’s why RMHC is so special. You can’t fully understand until you’ve experienced it. That’s why my family is grateful.” RMHC® Eastern Wisconsin HomeWord | 5
The Martin Family Makes Unexpected Memories As told by mom, Tammy
Our son, Nathan, and our late daughter, Madelaine, were diagnosed at an early age with mitochondrial disease, which affects multiple organ systems and greatly lowers a person’s immunity. We started seeking treatment at Children's Wisconsin to help with their palliative needs and establish a complex medical care team. Prior to COVID-19, we were able to stay at RMHC® Eastern WI whenever we came to town. It was a relief to know that we never had to worry about lodging, meals and all the comforts of home. The pandemic has added an extra element of stress to our medical trips from Kalamazoo County, Michigan, to Milwaukee every three months. It took away our peace of mind in many respects: limited access to rest stops during our commute to Milwaukee, the availability of medications and sanitizing supplies and, of course, our opportunities to stay at the House. Needless to say, we were not expecting to make RMHC® memories this summer, so my husband Doug, Nathan, Humphrey (our fantastic service dog) and I were delighted and honored when we were invited to represent the House as the first guests to stay at the newly opened Renaissance Milwaukee West hotel. We are still pinching ourselves to make sure we didn't just dream of that fairy-tale evening. Suffice it to say that the Renaissance Milwaukee West’s talented, caring staff is sure to make their hotel and restaurant coveted destinations for years to come. From the red carpet reception upon our arrival and a special welcome basket packed full of Nathan's favorite things, to the warm send-off after breakfast the next morning, we truly felt like royalty. As a family who takes great caution with all of Nathan's special medical needs, we are seldom able to do things like we did this August. We will be forever grateful for RMHC, the caring staff and all the people we’ve met on our journey whose humble calling has been to serve families with kindness and compassion.
Little Ways to Make a Big Impact You can have a positive impact on the families who call our House home today as well as in the future by making a current gift now and a commitment to a future gift. Recurring gifts allow us to provide our families with a community of compassionate care and support now and in years to come. Current Impact: • Cash, check or appreciated securities • Qualified charitable distributions • Donor advised fund gifts
Future Impact: • Estate gifts • Life insurance policies
Here is the information you’ll need to request a year-end contribution be mailed to Ronald McDonald House Charities® Eastern Wisconsin: Ronald McDonald House Charities Eastern Wisconsin 8948 Watertown Plank Rd. Milwaukee, WI 53226 Federal Tax ID 39-1433107
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www.RMHC-EasternWI.org
Providing a Safe Haven During Safer at Home Orders The Veasey Family On July 4, the Veasey family, from Rockford, Illinois, checked into the House when their son Noel was born. COVID protocols were already well established to keep our families safe. “Some things were a little awkward – I like to exercise and the fitness room was closed. Wearing a mask in the kitchen was different. But the staff and volunteers were always there if we needed ANYTHING! Once, I was having a really hard day and was pretty upset. A staff member gave me a gift card to Chipotle to help cheer me up. This small gesture really made a difference,” reminisced Dad. Our House became their home. Over the course of many months, the Secret Garden became a refuge for this couple – a place where, after many hours at the hospital, mom and dad could sit down, listen to the water feature, cook dinner on the grill and relax for just a little while before heading back across the street to Children’s Wisconsin. The family also appreciated the ability to cook dinner in the beautiful kitchens and enjoyed the catered meals brought into the House, which helped make things just a little easier on the hard days. Dad shared, “Our son’s health was the most important thing and going through a battle like ours during COVID was really tough. We learned to value things like family and home so much more. RMHC® really helped us so much.”
The Washbourne Family When the Washbourne family traveled to our House from Houston in January, they were surprised to discover little touches that made their stay feel more fun, even in the midst of a daunting medical journey. In March, COVID brought on many rapid changes, including a Safer at Home order, all at the height of their son's treatment "danger zone." The Washbournes’ world became very small, trips to Children’s Wisconsin and back to RMHC, day in
and day out. They were scared to go to the grocery store, so they were grateful that dinners were provided at the House on a regular basis. They shared that they "truly felt safe here." They appreciated all of the extras, large and small, that go beyond basic necessities – Easter treats that delighted even a 15-year-old, Mother's Day chocolates and even surprises for Dad on Father's Day. Mom recalls a delicious loaf of banana bread that was delivered to their kitchen, complete with a note that read, “With Love from the Managers.” The Secret Garden has provided the Washbourne family a peaceful and relaxing place to center themselves as mom and dad work hard to put on brave faces for their children. The Washbournes are grateful for “the people who work here and the volunteers who smile and provide such a loving and caring environment."
Did you know... ...the Coronavirus Aid, Relief, and Economic Security Act (CARES Act) created several opportunities for you to reduce your tax liability while also helping support families at RMHC® Eastern Wisconsin? Tax legislation, passed in late March, expands 2020 charitable giving incentives for taxpayers in the following ways: • You can now claim up to $300 in charitable contribution deductions in addition to the standard deduction. • If you itemize, the legislation removes the income limitation for a current charitable contribution deduction. • Although the legislation suspends required minimum distributions from your IRA for 2020, you are still able to make a charitable gift directly from your IRA to a charity without any tax impact. Please consult your tax advisor as we would love to talk with you about giving opportunities. Call Bridget Kesner, Director of Philanthropy, at 414-935-6511. She would welcome your call!
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Ronald McDonald House Charities® of Eastern Wisconsin, Inc.
non-profit org. US Postage PAID Milwaukee, WI Permit No. 568
8948 Watertown Plank Rd. Milwaukee, WI 53226-4802 Help us keep our mailing information current! Clip and return mailing label to us with your corrections or e-mail your change to jkrueger@rmhc-easternwi.org.
Ann Petrie, President/CEO 2020 RMHC® Board of Directors Todd Jones, Chairman Sandra Evans, Vice Chairman Dave Sandstrom, Treasurer Anne Horter, Secretary Peter Bartz, M.D. Dennis Buchan Josh Carlson David Frieder Dan Geigler Andrea Jonas Rashi Khosla Steve Kilian Paul LeTourneau Maureen Manning Mark Natzke Christopher Nickels Lindsey Pearson Patrick Sinks Jeffrey Steren Scott Turner Gary Zimmerman
4 Ways to Donate ♥ Go online - www.RMHC-EasternWI.org ♥ Text HomeWord to 41444 ♥ Call Bridget - she’d love to talk to you! (414) 935-6511 ♥ Clip it - send the form below to: RMHC® Eastern Wisconsin Attn: Jennifer Krueger 8948 Watertown Plank Road, Milwaukee, WI 53226
It costs nearly $130 per night for a family to stay at RMHC Eastern WI, yet we suggest our families make a donation of just $20 a night.
Enclosed is my gift $500 $250 $100 Other: _____ Name: Address:
No family is ever turned away for their inability to pay. Your ongoing support is a major reason why.
Telephone: Email: By giving your email address you will receive occasional e-newsletters. We do not sell or share information.
Credit Card: Visa AmEx MC Discover Security Code: CC Number: Name on Card:
Exp. Date:
Signature: Please send receipt via email. I'd like to cover the credit card processing fee. Please make checks payable to Ronald McDonald House Charities Eastern Wisconsin. Wisconsin Contributions are tax deductible to the fullest extent of the law.
HWB20
Thank you for your generosity!
Our Mission: To keep families together and promote the health and well-being of children