Faces of Howie’s House Stories
When you meet Asher, the first thing you notice is his big smile and the cute laugh that leaves it. “He likes to smile at the girls,” his mom Kendra says. “He’s such a little flirt already.”
What you may notice next are the wires attached to his stroller and the beeping of a machine that sits at the bottom of it, or the mask that wraps around his face to help him breathe.
“Asher hasn’t followed the normal path of anything,” Kendra says.
Just six weeks after he was born, Asher was placed on the transplant list to wait for a new heart. After a prenatal ultrasound, he was diagnosed with dilated cardiomyopathy when his doctor noticed something unusual about his heart.
While Asher waited for his second chance at life, he went into end stage heart failure and his kidneys and liver began to shut down. His doctors emergently placed him on a Berlin heart to keep him alive until a new heart became available. Surprisingly, on what was only supposed to keep his heart beating until he could receive a transplant, Asher thrived.
“He began doing normal baby things,” Kendra says. “He jumped from 10 to 15 pounds and became so much more expressive. He would smile and laugh while he watched people in the hospital.”
The day finally came when Asher and Kendra received news that he would receive his new heart. Asher received his precious gift of life because of a brave family’s decision–a decision that saved his life.
Unfortunately, Asher suffered some complications from his surgery. Within 10 days of his transplant, he underwent another major surgery.
“Asher was intubated in the hospital for the first month after his transplant,” Kendra says. “He was full of fluid and non-expressive…just not himself. It was so hard to go through that and think that I may have to say goodbye to my child.”
Thankfully, Asher made it through his second surgery. When he was finally able to leave the hospital’s care, the Howie’s House became Asher’s first home.
“I love that the Gift of Life Howie’s House is so clean and that it’s safe for immunosuppressed patients like Asher,” Kendra says. “Dinner is always made every night, which is wonderful. The last thing I want to do is cook when I get back from the hospital. It’s also so family-oriented. It was so easy for me to be a mom spending time with my children.”
While Kendra takes care of Asher, her family, including her father and other two children, come down to spend time with them on the weekends.
“One day we sat down in the Activity Center and watched movies all day,” she says. “We also eat dinner together in the garden and go on walks. We even went to a festival at one of the parks nearby.”
At the Gift of Life Howie’s House, Kendra is also able to take care of herself. She takes bubble baths in her private bathroom, uses the gym, reads in the library, sits outside, and participates in the evening activities with her daughter.
She also spends time talking to other families about their transplant care. She even learned that some of them are on the same medication as Asher. “Learning from [the other transplant families] gives me hope,” she says. “I’m less stressed because there are so many people to talk to. I didn’t realize how nice that’d be.”
Asher has recovered so well that he and his family were recently able to go back to their own home, but plan to return to the Howie’s House for their follow-up appointments.
“I know Asher may need more care in the future,” Kendra says. “And I’m just thankful that the Howie’s House exists.”
When Donna Jones was diagnosed with three different, simultaneous lung infections, the mother of four found herself in need of her children’s care and a “home away from home.”
“I’ve always been a very active mom and grandmother,” Donna says. “But as I got sicker and sicker, I was really grateful to have them be there for me.”
As Donna’s condition worsened, her daughter Nicole and her siblings decided together it would be best for their mom to have someone stay with and care for her. Nicole offered to move in with her mom and help take care of her, her pets, and her house.
Donna suffered a collapsed lung in 2012 and was able to recover well. Although she was moving more slowly than she was used to, she was able to attend three of her children’s weddings and continue working from home as an IT consultant.
Tragedy struck again on New Year’s Eve in 2015 when Donna suffered another collapsed lung. This time, her doctors suggested she consider a lung transplant. She was listed in 2017. Donna would remain on oxygen and require around the clock care until an organ became available for her.
Thankfully, Nicole was able to be by her mom’s side.
Donna received “the call” that a donor organ had become available in December of 2018 and together, she and Nicole quickly left their home in Maryland to get to Philadelphia. As soon as they arrived at the hospital, Donna was immediately taken to surgery to receive her precious gift of life. Nicole reassured her siblings: “I got mom,” she said.
Two of Donna’s other three children were able to arrive in Philadelphia following the procedure.
After her transplant, Donna spent 21 days in the ICU and 18 days in inpatient therapy. Afterwards, she and Nicole came to stay at Gift of Life Howie’s House so she could remain close to her doctors.
“I would recommend this place to anyone—it’s a comforting and loving environment,” Nicole says. “You get to talk to people at all points in the transplant journey.”
Although Nicole was the only one of Donna’s children to stay with her at the Gift of Life Howie’s House, the others felt so comforted knowing that their mother had a safe place to stay.
“I sent them photos and took them on a video tour,” Nicole says. “Instantly, they all felt at ease knowing mom and I were okay.”
“You make a family here,” Donna adds. “We all exchange phone numbers. You learn from others. You encourage them. You can really feel the love.”
Although all of Donna’s children could not be at her side as Nicole was, they all supported their mother in different ways. While she was in the ICU after her transplant, they visited and brought her grandchildren down to keep her company.
To help her grandson understand what happened to his grandmother, one of Donna’s daughters wrote the children’s book “My Nonna’s Boo Boo” to teach him about her lung transplant.
Donna’s transplant journey brought her and her children closer together. “This was a very emotional journey,” Nicole says. “I don’t regret anything, especially if it means that I can have my mom around. I just want her to get back to the person she misses being.”
“I am so grateful to have Nicole in my life,” Donna says. “She does everything for me. I am so blessed.”
Here at the House, mothers and daughters like Donna and Nicole can stay together and take care of each other while they navigate the difficult transplant journey. Other family members can also find comfort in knowing their loved one has a safe place to stay during a stressful time. Donna was able to recover after receiving her precious gift of life from an incredibly selfless donor and Nicole was not only able to take care of her, but find the comfort and support she needed as her mom’s caregiver, too.
This Mother’s Day, you can honor a special mother, sister, or woman in your life by making a gift to support the Gift of Life Howie’s House, a “home away from home” to many mothers and daughters like Donna and Nicole. Consider honoring someone all year along by making a monthly gift. Our Welcome Home Club for monthly giving helps make sure patients and their families have a safe, supportive space to return to at the end of each day—all year round.
When we’re feeling stressed or anxious, or we’ve just had a rough day, sometimes what makes it all better is spending some time with our pets.
Unfortunately, many transplant families are separated from theirs’ because they have to travel a long way from home to receive life-saving treatment.
That’s why as part of our Caregiver Lifeline Program, we bring in therapy dogs several times each month to spend time with our guests.
“There are some studies suggesting that petting animals can help reduce stress and anxiety,” says Talia, our social worker.
“Transplant patients and families staying at the Gift of Life Howie’s House are under tremendous stress and away from their own support networks at home, including their own pets. Therapy dogs give the families an opportunity to forget the stressful parts of the transplant journey, even just for a few moments,” she adds.
Carmen and Debra have been visiting our guests since we opened our doors in 2011.
When Debra pulls up into the Gift of Life Howie’s House parking lot, Carmen wags her tail in excitement. They both walk through the doors, greet our staff at the Front Desk, and then Carmen runs excitedly to our social worker Talia’s office to greet her.
Carmen was rescued from Puerto Rico and brought to the United States when she was just a few months old. When Debra and her husband first met Carmen, she ran right up to them, jumped in their laps, and licked their faces. Now she is 11 years old and has been part of the family ever since!
Carmen has never taken an obedience class before but passed her therapy dog certification with ease. “She’s so loving and giving,” Debra explains. “She just knows who needs her and what to do for that person.”
During their visits, Carmen and Debra sit in our living room and wait for our guests to stop by for some quality time. Carmen is always so happy to greet everyone who comes to say hello! She gives tons of kisses, happily wags her tail, and is even willing to just sit quietly by your side for a little while.
Kathy, a Gift of Life Howie’s House guest, loves hanging out with Carmen. “Being with Carmen is relaxing,” she says. “It’s positive therapy for me.”
Kathy also mentions missing her own dog, a Labrador named Molly, who is staying with her sister while she is away from home. “I miss her a lot,” she says. “I love seeing my son with Carmen because I know he misses Molly, too.”
Esther, another guest, agrees: “When you have so much going on all at once, sitting there with a dog is so comforting,” she says. “I’ve missed my dogs who are still at home while I’m here. Being with Carmen lets you forget it all for a little while.”
Debra loves talking to our guests and learning about themselves and their families—and even their dogs!
“Everybody has a dog story,” she says. “Hanging out with Carmen gives them the chance to talk about something or someone they love.”
Carmen also visits schools to help students de-stress during exams, and even takes part in a program where children learning to read can practice reading to her.
Debra recalls when she saw two children waiting in the window for Carmen to walk in, and she immediately ran over and began kissing them.
“I get so excited when people who’ve had a long day see Carmen,” she says. “It makes them feel better. I wish every place had a therapy dog program.”
The Gift of Life Howie’s House’s Caregiver Lifeline Program provides services specifically tailored to the needs of organ transplant patients, family members, and caregivers inside and outside the walls of the House.
Carmen is just one of the many therapy dogs we invite to spend time with our guests to help them relax after a stressful day, and also to provide another opportunity for guests to connect with each other. They have an important impact on our guests’ well-being and we look forward to having them every time they come to visit!
Are you interested in bringing your therapy dog to visit our transplant families at the Gift of Life Howie’s House? Contact our social worker, Talia, at tgiordano@giftoflifefamilyhouse.org.
To receive her life-saving liver transplant, Karen Wolbach was airlifted from her home in Burlington, Vermont to a treatment center here in Philadelphia. Her husband and caregiver, Richard, had just four hours to alert friends and family, pack a bag, find a place to stay, and make arrangements for someone to look after their home before the air ambulance arrived.
“There was no time for decisions,” Richard said. “We just got on the plane with the nurse, medical assistant, and the pilots. Everything seemed to move in slow motion.”
Karen had been getting sicker and sicker. She was growing extremely fatigued, nauseous, lost her appetite, and was beginning to jaundice. She no longer had the energy to take walks outside with her family, meet up with her friends for lunch, watch her son perform as a clarinetist, and had to resign from her job as a radiologic technologist because she was too weak to work.
Her need for a transplant had not just turned her life upside down, but had suddenly relocated her and her husband over 350 miles away to a city neither had ever been to before.
While Karen was in the hospital, Richard needed to find a place to stay. He initially booked a week-long hotel stay so he could be close to Karen while she was in the hospital, but with expensive city hotel prices, he knew he could not afford those accommodations for long.
Thankfully, someone on Karen’s transplant team told him about the Gift of Life Howie’s House. He gave us a call and there was a room available for him.
“A lot of people don’t realize that being a caregiver comes with a tremendous amount of stress,” he says. “It can be so overwhelming, but the Gift of Life Howie’s House took the worry out of my day so I could focus on caring for my wife.”
At the House, Richard had access to all of the supportive services we offer, including a private guest room, a warm, home-cooked meal each evening, free shuttle service to and from the hospital Karen was receiving treatment in, counseling from our licensed social worker, and support from a network of other families who understood what he was going through—all for just $40 per night.
Karen received her second chance at life thanks to an incredibly selfless donor shortly after she and Richard were airlifted to Philadelphia. She was able to join Richard at the Gift of Life Howie’s House for two weeks before they were given the OK to go back home.
While Karen was here, she too was able to rest. Each night, dinner was waiting for her as she came down to the kitchen. She hopped on the shuttle’s morning run when she had to see her doctors at the hospital. She was also able to talk with our social worker and other transplant families about what she was feeling.
“I wasn’t just healing physically, but I was healing emotionally,” she explains. “It was very therapeutic to sit down and share stories. It reminded me that I am not alone. If we had to stay in a hotel, we would never have gotten this kind of support.”
“The House has helped me heal, too,” Richard says. “We felt a little apprehensive coming back to Philadelphia for Karen’s follow-up appointments after all that’s happened, but once we came back to the Gift of Life Howie’s House, it was like we were home again.”
Now that Karen’s health has improved, she wants to get back to work and volunteer in her community, and spend time with her family.
Karen and Richard were away from their home for four months while Karen received her life-saving transplant and recovered here at the Gift of Life Howie’s House. At the beginning of their journey to Philadelphia, they had no idea how long they’d be away from home or how they’d afford to stay together and support each other during this difficult, scary time.
Without the House, Richard and Karen may have had to find an apartment, take cabs or public transportation to and from the hospital each day, find meals and a place to wash their clothes, and may not have met any other families on the transplant journey who could offer them friendship and support. Richard may not have even been able to stay by Karen’s side while she was in the hospital.
At the Gift of Life Howie’s House, they both received the support they needed.
When you make a gift to the House, you’ll help provide this support to countless other transplant families who are anxious, frustrated, and in need of support.
Will you make a gift to help families like Karen and Richard’s during one of the most difficult times in their lives?
Six-year-old Amelia has been through a lot since she was diagnosed with Alagille syndrome, a rare genetic disorder characterized by abnormalities to the bile ducts that harm the liver and other parts of the body.
She had heart and kidney surgeries even before her liver started to fail. After a liver transplant in 2016, she developed PTLD (Post-Transplant Lymphoproliferative Disorder) for which she is now undergoing chemotherapy. This complication and treatment means more visits to the hospital.
When she and her family come to Philadelphia for these visits, they stay here at the Howie’s House. On Amelia’s first visit, right after her liver transplant, she spotted the child-sized Adirondack chairs on our patio. It was too cold and snowy to sit there then, but on a return visit in the spring, she was really looking forward to them. To her surprise, the chairs weren’t there!
Amelia asked one of the staff members, “Where are the little tiny girl chairs?” The staff member replied, “They’re not out there?” Soon, the chairs were back in place and Amelia happily claimed “hers.”
Her mother, Bonnie, says: “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.”
For Amelia, the Howie’s House is a safe and welcoming place in between the “ouchies” of her medical care. For her parents, Bonnie and Brian, it’s an oasis of peace where their burdens are lifted—both financially and emotionally. They are grateful for hot meals cooked by friendly volunteers, cozy rooms and restful surroundings, and access to a whole community of people who truly understand what they’re going through.
“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.
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 Howie’s House is a safe and comforting haven for them. “We don’t lack for anything here,” says Bonnie.
If you visited the Gift of Life Howie’s House this summer, you may have met our former Guest Services Intern, Mya, smiling behind the front desk.
Mya came to Gift of Life Howie’s House looking to support an organization that has done so much for families like hers. Mya received her own precious gift of life—a new liver—and wanted to give back to others on the transplant journey. “I found this position online and immediately knew it was for me,” she says, smiling. “It’s amazing to see the work that’s done here. I would absolutely work here for 40 years if I could!”
Shortly after Mya was born, she was diagnosed with biliary atresia, a disease in which a liver duct is either broken or missing. Her doctors were able to perform a hepatoportoenterostomy, a procedure where doctors sewed a piece of her large intestine to her liver to help it drain. However, this was only a temporary treatment, and Mya and her family knew down the road that she would still need a transplant to live a healthy life.
“Throughout my whole childhood, I was very different,” Mya explains. “If you looked at me, you could tell something was wrong.” Growing up, Mya suffered from severe splenomegaly, which is an engorgement of the spleen as a result of liver fibrosis. “I looked like I was about six months pregnant. Whenever I played outside or was in gym class, I had to wear a large plastic guard around my abdomen to protect my spleen from rupturing. That was hard, especially as a child, because it makes you very different from your classmates; it makes you the ‘sick kid,’” she says.
When Mya was 11 years old, she caught a stomach bug—something not uncommon—but this time, she didn’t bounce back as she normally did. She was hospitalized, had to use Skype to attend class, and was unable to see her friends. She also lost a significant amount of weight and was given an NG feeding tube that she kept for over a year.
Mya, her family, and her doctors knew her liver was deteriorating. She was placed on the transplant list at CHOP and waited 18 months until she received her precious gift of life from a selfless donor.
“It was a terrifying process,” Mya reflects. “I remember looking at myself and thinking that I looked like a skeleton, but I found peace in knowing that there was always an end road. My mom always told me, ‘Thank goodness it’s just liver disease. We know how to fix this, and it will all be okay.’”
Mya got the call on April 9, 2013, which she now calls “the best day of the year.”
“All I wanted in my life was to not be different. I wanted to experience life without limitation and sickness…transplant gave me that and much more,” she says.
Mya’s transplant remains an important part of her identity today at 19 years old. “I’m never going to stop being open about my transplant,” she says. “And I won’t ever stop caring about this. I’ll never stop reminding myself how much I have to be grateful for, and I’m never going to feel like I can do enough for the people who saved me. It’s so important to keep in touch with that gratitude and never stop using it to fuel my life. That’s why I’m here [at the Gift of Life Howie’s House].”
After working here at the House, Mya has changed her major to Health Behavior and Promotion and hopes to work with transplant patients in the future.
“Growing up, no one I knew had a connection to transplant. I was the only one, and I felt so alone,” she mentions. “Coming here, I don’t feel alone. You don’t feel like you’re the only one who is going or has gone through this kind of pain. I never had resources like this—it’s a really special thing about the House. It’s a whole big family here, full of love, support, and friendship. It’s heartwarming to see how much the guests love this place, and even more heartwarming to have played a role in it.”
Mya also wants to write children’s books about getting a liver transplant or what it’s like having a feeding tube, and has thought about starting a blog about nutrition for those using a feeding tube.
“I am definitely going to make sure this experience remains part of my life and my daily awareness,” she adds. “I’ve looked forward to coming to work every day, and to be included in this environment and in [the Howie’s House’s] mission. Getting to know everybody has been so special, and I am so grateful for this incredible opportunity and place that I will never forget.”
One June morning, Joseph Mansaray woke up and found it difficult to breathe. His father, Peter, took him to the hospital where a chest x-ray revealed he had an enlarged heart. His doctor explained to him that the small, local hospital would not be able to help and had Joseph and his father transferred in an ambulance to another where he was admitted and spent 12 days in the ICU.
After several more tests, doctors there also felt there was nothing they could do to help Joseph. He and his father were transferred again, this time by helicopter, to a world renowned hospital in Philadelphia. Here, doctors were able to diagnose Joseph with cardiomyopathy, a disease of the heart muscle which makes it difficult for the organ to pump blood, and told him that he may need a transplant. Joseph’s mother, Mary, was also recently diagnosed with cardiomyopathy and was just beginning her transplant journey.
Doctors gave Joseph a left ventricular assist device, or an L-VAD, to help pump blood throughout his body, hoping it would strengthen his heart enough to later be removed. After surgery, Joseph was discharged to the Howie’s House where he and his father stayed during his recovery. His mother remained at home with his other siblings. A few weeks later, after three months in three different hospitals, Joseph and his father were able to join them. Life, however, wasn’t the same—Joseph couldn’t go to school, run, or play soccer.
That fall, Joseph returned to Philadelphia for a follow-up appointment where doctors found the L-VAD had not worked like they had hoped. Joseph’s heart was not healing and the next course of treatment was a heart transplant. Around this time, Mary had received her precious gift of life, but unfortunately, suffered major complications. She passed away in November 2015.
“Watching my mom’s transplant and what happened to her after was so hard for me. I was so sad that my mom had passed and also so scared that this was going to happen to me,” Joseph says.
Thankfully, his dad was there to support him.
“[Joseph] never complained. And as a dad and a caregiver, watching my son go through what he went through and handle it with such grace. It helped me. It really helped me,” Peter says.
In February 2016, Joseph received “the call” and was gifted a new heart thanks to a charitable act by a selfless donor. His recovery went smoothly, and 10 days after his surgery, he was discharged to the Howie’s House with his father once more.
“The House made life easier for me and my family during this time and I am very grateful for that,” Joseph says.
After a few more weeks, Joseph was able to return home. He was able to play soccer during his senior year of high school. Now he also plays in college.
“I thank everyone at the Howie’s House for all the good work they do every day and all that they have done for my family,” Joseph says. “They helped us through some of the hardest times in our lives, giving us somewhere to sleep, connecting us to other transplant families and donor families, and helping us when life was falling apart.”
“When the helicopter landed at the hospital in Philadelphia, I was alone with my son,” Peter explains. “I was afraid, worried, confused…but by the time we left [the Howie’s House], I left with a whole family.”
Peter is just one of the many strong husbands and fathers who stay at the Howie’s House. This Father’s Day, you can give them one less thing to worry about so they can focus on supporting their families and each other through such difficult times. Please consider making a gift to help support the fathers and sons like Peter and Joseph undergoing the transplant journey, or in honor of an important male figure in your life.
Click here to give!
“There are a lot of misconceptions in the African American community about organ donation,” Keith Chalmers reflects. “People know very little about organ transplantation and I want to change that.”
Keith’s passion for organ donation awareness started with his own transplant journey about 7 years ago when he visited his family doctor for what he thought was just a bad cough. However, the cough didn’t get better. Over the course of two years, Keith was diagnosed with pneumonia, emphysema, and finally, COPD. Eventually, Keith’s journey led him to be placed on the organ waiting list.
Keith is very thankful to his pharmacist who first introduced him to the Gift of Life Howie’s House, where he stayed for four days in 2013 for testing at the Hospital of the University of Pennsylvania. He was listed for a lung transplant. Keith received his precious gift of life from a selfless donor in March of 2015. Now, he stays at the House every 3 months for follow-up appointments.
“Without the Gift of Life Howie’s House, I wouldn’t have had a place to stay. I don’t think I could ever repay the folks there,” he says. “Everyone is so polite. If I didn’t live so far away, I’d be there volunteering every day. I’d help drive the van and clean up the house. Whatever I could do, I’d do.”
Keith is able, however, to volunteer every year during Gift of Life Donor Program’s Donor Dash.
Keith also spends a lot of time educating people about organ donation, specifically in minority neighborhoods. “Knowledge of the entire process is less common in these areas,” he says. “Not many African Americans know what organ donation really means or how it works. It isn’t advocated in the media enough.”
He keeps literature about organ donation in the back of his car, stands on line at the supermarket and asks people if they are donors, hangs banners outside his home, and even sets up a Q&A table outside his house in the summer to engage people walking by. Last Christmas, he helped 50 people register as donors.
He is extremely grateful for his precious gift. “Somebody saved my life,” he says. “Because of that, I’ll be out there, educating one person at a time.”
Jim and his wife, Kim, began their organ transplant journey in October 2014 due to complications with his liver function. He initially declined treatment because he wasn’t feeling sick and wanted to continue working towards his retirement. “There was no indication how bad it was,” Jim says. However, as time went on, Jim’s condition worsened, so much so that he was near death and his doctor recommended he turn to Hospice care. Neither Jim nor Kim accepted this diagnosis, so he began treatment. Towards the end his treatment regimen, his doctor informed him that he would need a liver transplant in order to sustain his life. The doctor referred him to a transplant hospital in Philadelphia where he would be tested and listed for a liver. For five months, Jim and his wife traveled back and forth from Virginia to Philadelphia for appointments.
During this time, the Princes’ planned a trip to visit Kim’s brother who was ill and receiving treatment in a hospital in Pittsburg. They planned to meet up with family friends Peggy and John during the trip, but when they arrived, they learned that John had suffered from a blood clot and was brought into surgery. Sadly, John did not survive and was pronounced brain dead later that afternoon. This was a terrible tragedy for their family, but John’s wife Peggy bravely decided to make the selfless decision to donate her husband’s organs—and she wanted Jim to receive John’s liver.
Shortly thereafter, Jim’s transplant team in Philadelphia flew to Pittsburg overnight to bring the liver back. After an incredibly unique chain of events and a brave family’s decision, Jim’s life-saving liver transplant surgery was successfully completed.
His story became a hospital favorite across different departments and floors. He stayed in the hospital for almost 12 days and then joined his wife Kim at the Howie’s House for the first month of his recovery. He attributes his strength during recovery to his faith and the Howie’s House’s warm, friendly environment. “Everybody’s so supportive [at the Howie’s House],” Jim says. “This is our house, and our family, too.”
“You never know the importance of how something we take for granted can change a life forever,” Kim reflects. “If you have a life, you can save a life. You never want to lose a loved one, and if there’s someone you can help, you should be willing to help someone else keep a loved one.”
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