Have you ever wondered how the people and charities you care about will fair when you are no longer here to help them?
A good way to make certain that your values live on is by writing down what’s important to you. Another is by making provisions in your estate plan to ensure your charitable support continues.
By including the Howie’s House in your will/bequest, you can help to ensure that the Howie’s House is able to maintain their affordable fees and broad array of services for all who need support— now and in the future. It is an easy and simple way that you can support the future of the Howie’s House, and continue care for transplant patients and families. Bequests can be a percentage of the remainder of your estate or a specific dollar amount. If you already have prepared a will, you can simply add a codicil amending it to include the Howie’s House.
IS YOUR WILL DUE FOR AN UPDATE?
Here area few reasons that individuals or couples may need to update their will:
• A change in marital status • The birth or adoption of a child or grandchild • The death of an individual included in your will • Retirement or relocation to another state • A change in assets • The start of a new business • New tax laws
ALREADY INCLUDED THE FAMILY HOUSE IN YOUR WILL?
Let us know so we can celebrate with you now! Enjoy recognition today as a Legacy Society member. Donors who notify us that they have made arrangements for planned gifts will be recognized as members of our prestigious Legacy Society. Learn more about the Legacy Society.
TO DISCUSS MAKING A PLANNED GIFT TO GIFT OF LIFE FAMILY HOUSE OR IF YOU HAVE ALREADY NAMED US IN YOUR WILL, please contact the Development Office at 267-546-9800 or email development@giftoflifefamilyhouse.org. Please consult your attorney, tax advisor or financial advisor before making a bequest or updating your estate plan.
Caregiver Lifeline Spotlight
by Laura Giannotti, MSW Gift of Life Howie’s House Social Worker
Finding Support through your Hospital Chaplain
The transplant journey can bring up many different emotions, questions, and even doubts about your spiritual or religious belief system. For some, faith and spirituality may grow during this time, while for others it raises questions and doubts. Hospital/medical chaplains can offer support and comfort for you and your family regardless of faith, spirituality, practices, or belief system. Chaplains are professionally trained individuals who reach across all faith lines to support patients and their families during a difficult medical time.
How can the Chaplain help you during the transplant process?
Be an additional support person by providing a listening ear Chaplains can offer a warm, compassionate, and judgment-free presence. There may be times when at the hospital you feel lonely, anxious, angry, or confused. Talking with the chaplain about your experiences and feelings may help you feel better. Chaplains recognize that patients and families come from different cultural and religious backgrounds and their goal is to offer you guidance and support in line with your beliefs and comfort level, not force their own beliefs on you. Along with offering support, a chaplain can lend an ear to simply hear your fears and celebrate your joys. Whether you are deeply spiritual, do not believe in a specific religion, or fall somewhere in between, you may want someone to talk to and hear your thoughts. Chaplains can be a sounding board for you, and even offer support around decision making and finding meaning in your own or a loved one’s illness.
Support your beliefs and practices and provide guidance Faith can impact one’s emotional and physical well-being and chaplains can help you strengthen your spiritual health, if desired. This can be in the form of discussing faith-based questions you may have or discussing uncertainties about what you are going through. It can be a conversation around deepening your beliefs. A chaplain may be able to help you with your spiritual needs, such as lending you a Bible, prayer rug, Sabbath candles, etc. Although the resources available will vary among different hospitals, chaplains want to support you and address your spiritual needs in any way that they can. Additionally there may be a time when you want to participate in a religious ritual or receive a sacrament– the chaplain can help you by leading, scheduling, and sometimes even designing these rituals and sacraments. They can also pray with you and for you at any time – while you are at the hospital with the patient for a transplant evaluation, post-transplant appointment, during a hospitalization, while you or the patient is waiting to go into transplant surgery, or while you are visiting the patient in recovery.
Help you connect or reconnect Is there someone you would like to connect or reconnect with? Chaplains can act as mediators or reconcilers when needed. They can also help you connect to a faith community or with a particular belief system. If you would like someone from your faith community to visit, a chaplain may be able to coordinate this visit as well. Hospital chaplains are typically available between Monday and Friday, but at many hospitals, services are available 24 hours a day. Contact your hospital chaplaincy office or speak to your transplant social worker or nurse for specific information regarding their services and your needs. Additionally, please feel free to contact the Caregiver Lifeline Program Social Worker at CaregiverLifeline@GiftofLifeFamilyHouse.org.
Future Business Leaders of America to Create Awareness and Support Transplant Families
Students of the Souderton Area High School Future Business Leaders of America (FBLA) recently hosted a bingo fundraiser to raise funds for Gift of Life Howie’s House as well as raise awareness for organ and tissue donation as part of their community service project.
The fundraiser involved several FBLA students including Jayme Barnett, whose father received a life-saving liver transplant in September 2016.
“The mission of Gift of Life is important to me, especially now since my father received a transplant that saved his life. My focus for this project was to be able to educate others on organ and tissue donor awareness and help the mission that has saved so many lives… I also wanted to support those who are going through the transplant process at the Howie’s House.”
On March 29, 2017, members of the FBLA proudly presented the $3,000 proceeds, which will benefit the Howie’s House’s Adopt-A-Family Program.
In addition, the FBLA group has established an Adopt-A-Blanket campaign where donations are collected to support materials to make blankets. With these supplies, students make warm, colorful fleece blankets for transplant patients and their families staying at the Howie’s House. To date, the group has distributed over 100 blankets to transplant families.
This project also served as their platform at the FBLA state leadership conference in Hershey, Pennsylvania in April, where the group placed 5th in the state for their community service project presentation.
Arthur and students from the Lawrenceville School volunteering as Home Cook Heroes at the Howie’s House.
You might recognize Arthur Thomas, a heart transplant recipient who walked his donor’s daughter down the aisle at her wedding last August. That sweet moment became a viral video sensation. It has been viewed by millions and has made a lasting impression on people around the world. But Arthur’s story and impact hits closer to home in a small community in Lawrenceville, New Jersey, where a group of students came together to support the Gift of Life Howie’s House and raise awareness about the importance of organ and tissue donation.
Twenty-six years ago, Arthur “Tom” Thomas was diagnosed with ventricular tachycardia, a condition that causes the lower heart chambers to beat too quickly. During most of that time, Arthur was able to live comfortably without any serious problems. But in 2006, his condition worsened and he was in congestive heart failure. He finally received the news shortly after that a match had been found and he’d be receiving his precious gift of life with only hours to spare.
In 2007, just one year after receiving his life-saving transplant, Arthur decided he wanted to give back. He set out to educate students about the transplant process at The Lawrenceville School in New Jersey where he used to be a college advisor to students. His wife, Nancy, currently serves as a Dean of the school. Arthur’s story inspired students to take the initiative to help spread awareness, and support those whose stories are similar to his. As a result, students created the Lives Saving Lives Club and asked Arthur to mentor as a faculty advisor. The Lives Saving Lives Club is completely student-operated and hosts a number of fundraisers and benefits, which all raise money for Gift of Life Howie’s House. Students have turned what started as a small club into a community-wide effort to raise awareness and funds – and their success has been truly remarkable! The club’s devotion to the Howie’s House began back in 2009 when the initial campaign to start the House began – and has since raised over $30,000! Their outstanding support and dedication to our mission helps provide our guests with comfortable lodging, hot meals, a fully stocked pantry, a free shuttle service and so much more. Such support helps alleviate stress transplant patients and families face day-to-day – mentally, physically and emotionally.
When the students of the Lives Saving Lives Club learned that construction for the Howie’s House was breaking ground in 2011, they began to focus on both donation awareness and supporting transplant patients and families who come to Philadelphia for transplant-related care. The club hosts an annual Organ Donor Awareness Benefit Dinner where students, parents, family members and guests can enjoy a four-course meal and live string quartet. Proceeds raised from the event went toward programs at the Howie’s House – such as the Adopt-A-Family Program. This program, thanks to generous supporters like the Lives Saving Lives Club, allows the Howie’s House to keep nightly fees low, and ensures that no family will be turned away because they can’t afford to pay. In addition to their benefit, the club frequently visits the Howie’s House to prepare and serve meals for transplant families through the Home Cook Hero Program. Arthur knows that visiting with transplant families and patients lets his students see the impact they have on their community.
“The students are seeing folks who are going through this. It’s very real to them, and that’s special.”
The members of the Lives Saving Lives Club are truly making a difference in the community, and have helped many who are going through a similar journey that Arthur went through ten years ago. This experience is not only beneficial for the Howie’s House and transplant families, but also an incredible eye-opener for members in the club. “With this club, I wanted to give the students a different perspective, and to show them just how precious life is,” said Arthur.
Groups and clubs, like the Lives Saving Lives Club, are one of the reasons the Howie’s House is able to offer a “home away from home” to thousands of transplant patients and their families. Arthur and his students are an example of how one small step can lead to helping the greater good.
By Talia Giordano, MSW, LSW Gift of Life Howie’s House Social Worker
Transplant caregivers are not only caregivers – they may also be a mom, dad, daughter, son, sibling, spouse, significant other, friend, peer, boss, coworker, etc. We all wear many hats in our lives – some of those roles may be long-lasting and some may come and go depending on our stage of life. Excelling at these many roles can be very gratifying and even enhance performance in those roles. However, multiple roles can also mean difficulty managing time, potentially disappointing someone or yourself, creating stress, and even feeling burnt-out. It is important to identify ways to manage each of our roles to avoid becoming overlystressed or burnt-out.
PRIORITIZE: Begin by writing down your different roles and important values and responsibilities within those roles. Think about which are most important and current. It’s helpful to be specific here. For instance, instead of writing family, write the specific roles within your family. Family may be very important to you, but your responsibilities related to each role may vary – example mom, son, or spouse. As you think meaningfully about your roles, you begin to identify the values you place within those roles, which can help to better prioritize and manage them
Example:
1. Spouse – spending [quality] time with my spouse, being an attentive and supportive spouse, feeling loved and providing love.
2. Caregiver – providing support and care to my spouse’s transplant needs such as transportation to appointments and medication help, encouraging them by being positive and bringing hope to my spouse.
4. Parent – spending quality time with my adult child, providing support, feeling connected.
5. Friend – laughing with friends, having someone to listen, enjoying hobbies with someone.
PLAN: Plan ways to fit important tasks and responsibilities into your schedule and write them into your calendar. If being a spouse and spending time with your spouse is important to you, then plan on ways to spend time together doing meaningful things. At this time you can also begin to think about whether you want to integrate certain roles, or keep them separate from one another. Integrating or separating is completely up to you and what you feel works best. For example – does spending time with your spouse by going to a clinic appointment also count as “spouse time?”
REFLECT: Sometimes we spend time on tasks or responsibilities that are not meaningful to us. It is important to reflect on how you feel about the different roles you play and how you are managing them. After some reflection, you may realize some tasks should be prioritized higher than others. Some tasks may be integrated with others, while some may not. For instance, if you feel your role as a spouse is weakening because your role as a caregiver is strengthening, then you can begin to identify ways to try and separate the two – example: spending meaningful time with your spouse separate from your transplant-related care time together – going to a movie vs. visiting the doctor. Reflecting on this can help you understand where changes might be best made to better manage the many roles you have as well as reduce stress and improve your overall quality of life.
Looking for additional support or information? Please reach out to our social worker, Talia Giordano, at caregiverlifeline@giftoflifefamilyhouse.org or 267-546-9817.
Four Ladies and Friends L-R: Colleen Cairns, Claire Green, Gail Barranger and Sandy Kelly. Not pictured, Joy Appel.
The sweet smell of freshly baked goods straight out of the oven is something that makes a house feel like home. Whether it’s a crisp and delicious apple pie or warm chocolate chip cookies – most of us can remember a time when our mothers, grandmothers or someone we love made our favorite treat at home. One Home Cook Hero volunteer baking group makes sure that the Howie’s House is filled with these delectable indulgences for families to enjoy at their “home away from home.”
The “Four Ladies and Friends” started baking for the guests at the Howie’s House over a year and a half ago. Sandy Kelly, a retired nurse of 30 years and founder of the group, heard about the Howie’s House after attending a conference at Gift of Life Donor Program. She and three of her friends wanted to honor their friend’s son, who tragically passed away and selflessly donated his organs to save others. What was once four ladies has now grown into a group of people who are eager to help. “We started out as the Four Ladies. Now we call ourselves the Four Ladies and Friends because we have all kinds of people who want to contribute,” explains Sandy, “we were connected because of my girlfriend’s son. It really hit home to help here.”
Sandy and her husband have stayed at similar hospitality houses like the Howie’s House when her husband needed to receive care.
“To me, it’s really important. You know a lot of people who are really sick, and they need a place like the Howie’s House.”
As Home Cook Hero volunteers, the Four Ladies and Friends bake a variety of sweets that are irresistible. You name it – the group can bake it. Guests enjoy their pies, cupcakes, brownies, scones and a variety of different cookies. During the holidays, families also help themselves to themed baked goods, such as Halloween cupcakes, Valentine’s Day cookies, St. Patty’s Day donuts and much more! “My step-daughter helps us schedule a time to visit and also bakes. Some of my grandchildren get involved too. We like to volunteer together – it’s really become a family thing,” said Sandy.
When asked of her fondest memories as a volunteer, Sandy said, “The most memorable moment for me was when an elderly woman and her husband, who were staying at the Howie’s House for many months, turned to me and said ‘I’m so impressed with it here – the doctors come in and cooked for us! My husband’s doctor who did his transplant came and cooked!’ You can tell people are so thankful for the Howie’s House.” The woman was referring to her husband’s transplant team who also signed up to be Home Cook Hero volunteers.
One of the many reasons the Home Cook Heroes program is so important to guests is because they can connect with others on a more personal level. Part of what makes Gift of Life Howie’s House a “home away from home” are volunteers like the Four Ladies and Friends who generously dedicate their time, talents and resources to serving families. Whether it’s baked goods or a home cooked meal, Home Cook Heroes volunteers ensure transplant patients and their families have a little taste of home while they stay at the Howie’s House. If you’re interested in becoming a Home Cook Hero, please click here.
Merida Bourjolly and her 16-year-old daughter, Yani Barrow, are two peas in a pod. They both laugh easily and are often told they look and sound alike. They have been through many difficult moments during the past three years as Merida underwent kidney dialysis and then transplant. And yet they remain upbeat and inspire those around them.
Though Merida was born with two healthy kidneys, at three weeks old she developed a kidney infection and her left kidney had to be removed. Three years ago, during a routine doctor visit, she was told that her right kidney was failing. Not long after, she was listed for a kidney transplant. Merida received the gift of life in early December.
Merida’s laugh and smile helped Yani throughout their ordeal. “She has positive energy around her,” says Yani. “I want to be around people like my mom. I try to take her positivity with me to school.”
Merida credits the Howie’s House with helping her maintain her optimistic outlook.
“I felt no negativity there, nothing but encouragement to feel better and to get well. There’s so much love that you experience from the staff, from volunteers who come to cook for us, and those who shuttle us to the hospital.”
Merida continues, “You can’t help but feel happy during your stay. I was never scared or felt like I was far from home — particularly due to the staff. They went out of their way to make us comfortable,” adds Merida. “They were an important part of my care, recovery and well being.”
Yani is studying ballet and modern dance at the prestigious Frank Sinatra School of the Arts High School in New York City. Merida is a cosmetologist and has her own salon where she encourages her clients to pursue a healthy lifestyle. She continued to work three days a week while undergoing dialysis. Merida and Yani would leave their home in Queens at 5:30 in the morning so that Yani could catch a bus and two trains to school and Merida could make it to dialysis early and be home to help Yani with her homework. During Yani’s school breaks, she went with Merida to dialysis so she could see firsthand what her mother was going through.
Merida coped with cold extremities, pain, and cramping brought on by many hours of dialysis, which she needed to stay alive while she waited for a kidney to become available. Regardless of her discomfort, she went to all of Yani’s dance recitals and school meetings.
Yani explains, “God blessed my mother to have this positivity. When I had a show or a meeting, and her muscles were cramping and her body was hurting because of dialysis, instead of her saying ‘No, I don’t feel good,’ she’d always say, ‘I’ll be there.’” In 2015, during her sophomore year, Yani asked Merida if she could be in a pageant. She thought it would help build her confidence. Merida agreed. Yani competed first at the state level in the Miss New York Junior Teen pageant, where she was among the top 10 finalists, first runner-up for talent, and second runner-up for modeling. Her success qualified her to go to the National American Miss pageant in California, where she also did well. These were remarkable achievements, especially since she was new to such competitions. Merida arranged to get dialysis while she was in California, so she could be there to coach Yani and do her hair and makeup.
“I couldn’t have done it without her. She’s a really strong woman. I can’t believe how strong she is.” says Yani.
Merida stayed at the Howie’s House for two months while she was recovering from transplant surgery, with family members coming in from as far as Haiti to be at her side. She credits the healing environment there for her peace of mind. “It allowed me to not have to think of the things that I would have to think of if I was home. It allowed me the comfort of being able to go to the hospital using the shuttle services. The shuttle drivers wanted to know how I was feeling. The social worker wanted to know how I was feeling. The staff really looks out for you and your needs.”
“Staying at the Howie’s House also allowed me to grow spiritually. I experienced a lot of things that I wouldn’t have gotten the chance to otherwise, like hearing the stories of the people who volunteer there and why they come there to give back.” “I’ve made so many friends at the Howie’s House, people I would not have otherwise been able to get to know or to hear their stories. That was huge for me. Finding out about their transplants and how it affected them and their families. It really was a growing experience for me to be there.”
The affordability of the Howie’s House also provided peace of mind for Merida, a single mother. “It was very important to me, knowing that I’m self-employed and was going to have to stop working during my recovery process. Not having to stay in a hotel was really major for me. Then to find out how affordable the Howie’s House made it for us was really a blessing to our family.”
Have you ever wondered how the people and charities you care about will fair when you are no longer here to help them? A good way to make certain that your values live on is by writing down what’s important to you. Another is by making provisions in your estate plan to ensure your charitable support continues. By including the Howie’s House in your will/bequest you can help to ensure that the Howie’s House is able to maintain their affordable fees and broad array of services for all who need support— now and in the future. It is an easy and simple way that you can support the future of the Howie’s House, and continue care for transplant patients and families. Bequests can be a percentage of the remainder of your estate or a specific dollar amount. If you already have prepared a will, you can simply add a codicil amending it to include the Howie’s House.
IS YOUR WILL DUE FOR AN UPDATE? Here are a few reasons that individuals or couples may need to update their will:
A change in marital status
The birth or adoption of a child or grandchild
The death of an individual included in your will
Retirement or relocation to another state
A change in assets
The start of a new business
New tax laws
ALREADY INCLUDED THE FAMILY HOUSE IN YOUR WILL? Let us know so we can celebrate with you now! Enjoy recognition today as a Legacy Society member. Donors who notify us that they have made arrangements for planned gifts will be recognized as members of our prestigious Legacy Society. Visit www.GiftofLifeFamilyHouse.org for more information.
TO DISCUSS MAKING A PLANNED GIFT TO GIFT OF LIFE FAMILY HOUSE OR IF YOU HAVE ALREADY NAMED US IN YOUR WILL, please contact, Gift of Life Howie’s House Development Office at 267-546-9800 or email development@giftoflifefamilyhouse.org.
Please consult your attorney, tax advisor or financial advisor before making a bequest or updating your estate plan.
The Gift of Life Howie’s House rounds out a ‘circle of care’ for transplant patients and families
Our ‘home away from home’ has helped thousands find peace of mind and hope.
‘Where does a polar bear keep his money?” teases 5-year-old Amelia Torgersen to our reception desk staff who have been eagerly awaiting her arrival. “In the snow bank,” she answers and giggles.
Every time Amelia comes running into the Gift of Life Howie’s House with her parents, Bonnie and Brian, she immediately looks for the smiling faces she has come to know and trust. She brings her latest stuffed “friend” and asks that it be given a yellow wristband ID, just like hers.
It’s hard to believe that bouncy, fun-loving Amelia had a liver transplant just nine months ago, or that she is now undergoing chemotherapy for PTLD (Post-Transplant Lymphoproliferative Disorder), a complication that can occur after transplant. Amelia has struggled since birth with Alagille syndrome, a rare genetic disorder characterized by abnormalities to the bile ducts that harm the liver and can affect other parts of the body. The genetic defect that causes Alagille can be inherited, or occur randomly.
Amelia had heart and kidney surgeries, even before her liver started to fail. At that point, the Torgersens relocated from their home in Nashville, Tenn. through Brian’s employer — first to Florida and then to Pittsburgh. They wanted to be as close as possible to The Children’s Hospital of Philadelphia and its renowned Alagille Syndrome Clinical Care Program, and for her transplant surgery.
Not one to complain, Amelia now bravely faces too many ‘ouchies’ during chemotherapy, but looks forward to staying at the Gift of Life Howie’s House where our staff make her feel special.
Five years of caring
On July 11th, Gift of Life Howie’s House celebrated its fifth year of serving transplant patients and their families receiving care at one of the eight transplant centers in Greater Philadelphia. In this short time, we have served more than 1,300 transplant families, many of whom have stayed with us several times over the course of their loved one’s care. In total, we’ve provided over 33,000 room nights of comfort.
“At first, we didn’t know if it was going to work,” says founder and CEO, Howard Nathan, reflecting back on the leap of faith that brought together benefactors, board members, health care providers, government agencies, and other supporters to help build a “house” for patients and families going through the transplant process.
Today, the success of the Gift of Life Howie’s House is evident. “I ask almost every day about occupancy. It makes me proud when 28 out of our 30 rooms are filled. It reminds me that we did the right thing, that the need that’s desperately there is being met.
“I think what sets us apart is our staff members who are there, available, and who care 24/7,” notes Howard. “I think that families understand that and are touched by it.”
The Torgersens agree. When Amelia came to stay at the House after her liver transplant in December, she was drawn to the kid-size Adirondack chairs on our patio. But because it was cold and snowy, she couldn’t sit outside. When they came to stay in the spring, Amelia’s first thought was to run outside to sit in ‘her’ chair, but the chairs weren’t there, explains Brian. “So we go inside to Diana Elbanna (resident manager) and Amelia says, ‘Miss Diana, where are the little tiny girl chairs?’ And Diana says, ‘They’re not out there?’ So there was this brief commotion over the chairs. The next week, guess what, the little tiny girl chairs were there.”
Adds Bonnie, “Even on the days that are difficult for Amelia, she talks about sitting in ‘her’ chair. And so the patio is somewhere we can go with her at the end of the day where she has a little time to sit in her chair and just relax and refuel for the next day.”
Whether it’s having access to a fully stocked pantry and tasty leftovers if they miss the evening meal, or toiletries they forgot to pack, the Gift of Life Howie’s House is a safe and comforting haven for them. “We don’t lack for anything there,” says Bonnie.
Rounding out a ‘circle of care’
A ‘circle of care’ for transplant patients and families begins when a person with end-stage organ failure is listed for transplant. The list is national and Gift of Life Donor Program works with its partners around the country to find willing donor families and viable organs.
“The reality is that the number of people who can donate is very small. Only about 1 to 2 percent of all of the people who pass away can be considered as potential organ donors,” explains Howard, who has been with Gift of Life Donor Program since 1978 and is its President and CEO. “In our region, out of about 40,000 people who die each year in the 129 hospitals we serve, there are only approximately 800 who could be potential organ donors. That’s why there’s a shortage. It’s not because people are unwilling. It’s because the number who are medically suitable is very small.
“This year we’ll have over 500 organ donors and more than 1,300 people receiving transplants in our region. That doesn’t sound like a big number, but it’s the largest anywhere in the United States, probably the world, for any one region.”
Gift of Life Donor Program is responsible for working with the transplant teams to preserve the organs and safely transport them to waiting surgeons, patients, and families. The Gift of Life Howie’s House takes care of families while their loved ones are waiting to be transplanted, during recovery, and throughout post-transplant care. While other transplant houses typically serve one transplant center, the Howie’s House serves all eight centers in its vicinity. “That’s pretty unique, and I’m very proud of that,” says Howard.
In addition to affordable lodging, home-cooked meals, and transportation, the Gift of Life Howie’s House also provides education, counseling, and emotional support through its Caregiver Lifeline Program. The first of its kind, this program provides a supportive network and educational services specifically tailored to the needs of organ transplant patients, family members and caregivers — those staying at the House as well as those living in the broader community.
For the Torgersens, the House is a “tool in a toolbox” to make life easier. “When you’re at that point of fear and anxiety — things that come with the unknown — there’s somebody that’s got your back. It doesn’t make anybody’s individual situation better, their difficulties are going to be just as challenging, but to know somebody’s got your back is meaningful.” explains Brian.
Making every day count
When traveling down the long and winding road of caring for a chronically ill loved one, it is easy to lose focus on the everyday things that give life meaning.
“We had to work very hard to give Amelia what we feel is the best quality of life: That is, to step away from the clinical side of things and remember that she’s a little girl — and take her to the beach, take her to Disney, take her to the park. Sometimes with the medical side of things, you almost want to put life on hold — until transplant, or until she’s done with chemo, or things like that,” explains Bonnie.
For Amelia’s fifth birthday, at her request, the family went camping. When the weather turned warm, they packed Amelia’s medical gear, along with their camping gear, and headed out to Allegheny National Forest. “Amelia is definitely an outdoor girl,” laughs Bonnie. “We gave her a choice of going out on a boat or hiking. She picked hiking. She had a little walking stick. She kept saying, ‘I’m the leader, follow the leader.’ She loves to explore. She enjoyed studying the rocks, the different leaves, and trees. That’s her happy place.”
Adds Brian: “She doesn’t understand life. As far as she knows, it’s kind of rough, because it’s always been rough. But she’s a fun, loving spirit that when you’re around her you just smile. And you don’t do it because she said something funny; you do it because she’s this sweet, beautiful thing.”
Although they have health insurance, the Torgersens have faced substantial out-of-pocket costs, since Amelia’s birth, for medications, medical supplies, formula for her tube feedings, and travel to and from Philadelphia. “By the time you put all of the pieces together, it’s a costly process,” says Brian.
Securing the Howie’s House’s future
“Each year, we have to raise about $1.7 to $1.8 million dollars just to keep the doors open,” notes Howard. Driving the need for funds is the Gift of Life Howie’s House’s commitment to maintaining a low nightly rate of $40 even though the actual cost for providing all of the included services is $165 per room per night. Each room accommodates up to four people. Families who can’t afford the nightly fee are given subsidies. “We don’t turn anyone away because of their inability to pay,” adds Howard.
The House depends on charitable contributions, large and small, to make this possible. “Last year we had over 2,300 individuals or organizations give us charitable contributions. I wish I could name them all. We’ve even had grade school kids hold fundraisers and collect money at school. Businesses will do dress-down days and collect $5 from everybody wearing blue jeans. Those combined gifts of $200, $300, they help.”
The Gift of Life Howie’s House works, adds Howard, because of neighbors helping neighbors, whether through charitable contributions or by volunteering.
“Every time I walk through the door at the House, it really makes me proud of our team, of the families who are courageous in going through transplantation, and our volunteers. When I meet our Home Cook Heroes — many of whom are transplant families — and our other volunteers, I am truly grateful. We simply couldn’t do it without them.”
To make a charitable gift to the Gift of Life Howie’s House, or to volunteer, please use the enclosed envelope or visit us online at www.GiftofLifeFamilyHouse.org.
Stay tuned over the next few months as Gift of Life Howie’s House unveils a special way that you, your family and friends can celebrate 5 years of the House!
