Faces of Howie’s House Stories

Mattman posing for a picture with Heartman during his stay at the Howie’s House back in 2014

Many of you may remember Matthew Brown, also known as “Mattman,” who stayed at the Howie’s House with his mother, Kelly, back in 2014. He received his precious gift of life—a life-saving heart transplant—at just five years old. Now Matthew is a bright, happy nine year old boy in the fourth grade, and we are so happy to let you know that he is doing very well!

Before Matthew Brown was five years old, he’d had four heart surgeries. He was born with a defect that was weakening his heart. The day after Christmas in 2013, he was medevacked from his local hospital to the Children’s Hospital of Philadelphia and listed for a transplant.

“I really had no idea how long we’d be away from home,” Kelly explains. Thankfully, Matthew received his transplant on June 25th, 2014 and was able to stay at Gift of Life Howie’s House with her as he recovered.

Kelly and Matthew stayed in Philadelphia for 8 months—from the day Matthew was flown to the Children’s Hospital of Philadelphia to the day his doctors told them it was OK to go home.

Matthew and Kelly visiting Gift of Life Howie’s House’s Holiday Campaign poster

During his stay, Matthew was also featured in our 2014 holiday campaign, using his brave transplant journey to help support other families like his.

Matthew and his family in the hospital as they waited for his gift of life

Four years later, Matthew and Kelly still return to the House every three months for his follow-up appointments.

Matthew says he loves coming back to the Howie’s House because it’s “nice and comfortable and the food is tasty!” Last time he and Kelly were here, they enjoyed a delicious “Philly-style” dinner—cheesesteaks and corn dogs—prepared by our volunteers.

He also loves running into Ms. Diana at the Front Desk. They always have a staring contest and a thumb war. He’s a lot bigger now than he was when he first stayed here, but Ms. Diana can still beat him from time to time.

Matthew is a happy, healthy 4th grader now. His favorite subjects are math and history, and he still hasn’t decided what he wants to be when he grows up. He loves playing video games on the tablet and on his computer, and spending time with his family.

Matthew and his family hiking along a waterfall (something he could not do before his transplant)

Matthew and his family are just one example of the hundreds that come to the Howie’s House each year navigating the difficult transplant journey.

“The Howie’s House really supported us throughout our journey,” Kelly says. “It was nice to meet families going through similar challenges. It really made me feel so much better.”

Matthew poses in front of the Rocky Steps at the Philadelphia Museum of Art five months post-transplant

It was because of our generous community that Matthew and his mom were able to stay together and had a safe place to return as they adjusted to Matthew’s second chance at life.

Each year, families like Matthew and Kelly’s come to the Howie’s House for support as they navigate the difficult transplant journey, and it is because of people like you that we are able to be their “home away from home.”

We are so proud to have helped a brave boy like Matthew and a strong mother like Kelly, and we look forward to serving other transplant families coming to Philadelphia with you by our sides.

Thank you!

 

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 happily sits in ‘her’ chair to relax after a long day of doctor’s appointments

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.

Lauren Anello, past Gift of Life Howie’s House guest

While her granddaughter was on life support awaiting a heart transplant, Lauren Anello was living in the hospital out of her suitcase. “It’s so hard to sleep in an ICU when there is no bed to sleep on,” she says. “I slept in a reclining chair.”

Lauren’s granddaughter was born with a condition called hypertrophic cardiomyopathy, where heart muscle develops abnormally thick, making it harder to pump blood throughout her body. Thanks to an incredibly selfless donor, she received her precious gift of life in 2011.

Lauren and her granddaughter were able to stay at the Gift of Life Howie’s House after the transplant surgery, and they come back at least once a year for follow-up appointments. “There were so many times I’d come back from the hospital unable to see straight,” Lauren explains. “To have a place to lay your head at night with a clean shower is absolutely amazing.”

If the Anello family didn’t have the Gift of Life Howie’s House, they’d have to drive two and a half hours each way from their home in rural, northern New Jersey. “I was terrified of having to find a place to live in Philadelphia. It isn’t something we can afford. But at the House, the staff made it not scary. They welcomed us with open arms.”

During her stay at the House, Lauren also made a very close knit group of friends going through the transplant journey—and they still keep in touch years later.

“I don’t know any other organization like the Gift of Life Howie’s House. All of my basic necessities are met here. It is a welcoming, safe, and secure place to go. I can talk to a social worker, get a ride to the hospital, and relax in the garden outside. My stay at the House gets better each time.”

As a member of the Welcome Home Club, you can help people like Lauren and her granddaughter who are undergoing the often stressful transplant journey. A small commitment from you, whether its $10, $21, or $100 a month, will go a long way to provide meals, use of a full-service kitchen, transportation, and a place to sleep for transplant families traveling a long way to receive life-saving care.

Most importantly, when you join the Welcome Home Club, you’ll give a family one less thing to worry about, allowing them to focus on what’s most important—caring for themselves and their loved ones.

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.

Mya, right, and her friend at the beach before her liver transplant

“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 was on the list for 18 months before she received her precious gift of life and spent time in and out of the Children’s Hospital of Philadelphia

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.

The day Mya returned home after her transplant

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].”

Mya helped coordinate guest stays, Gift of Life Howie’s House programming, and offered a smile to everyone who walked through the door

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 and other Guest Services Interns, Celine and Damarah, during the Gift of Life Howie’s House’s 7th birthday party

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.”

Something very special happened in the Gift of Life Howie’s House kitchen this summer.

Bryson and his family with Mason’s parents in the Gift of Life Howie’s House kitchen

Two families not only came together to cook a warm, home-cooked meal for our guests, but to also celebrate the life of toddler Mason Hess, an organ donor who saved four lives.

Mason Hess and his parents, Kellie and Adam

The two families were Mason’s own, and the family of the little boy who received Mason’s lungs, Bryson Palmer.

Bryson Palmer, the recipient of Mason’s lungs, celebrates Mason’s life

Kellie and Adam Hess regularly volunteer at the Gift of Life Howie’s House as Home Cook Heroes as a way to keep Mason’s memory alive. When Bryson Palmer and his family flew from their home in Ohio to visit the Hess’ in New Jersey, everyone thought it would be a great idea to cook a meal together at the House. The only volunteer date available during their visit was Mason’s birthday.

“It was such a moving experience to cook with the family of one of Mason’s recipients and see how far both families have come,” Kellie says. “We are so happy that this wonderful little boy is healthy. We felt such a bond with him.”

Kellie Hess, Mason’s mother, hugs Bryson, the recipient of her son’s lungs

When Bryson was five months old, he was diagnosed with neuroblastoma cancer and received 18 months of treatment, including chemotherapy, stem cell transplant, radiation, and immuno-therapy. Unfortunately, he suffered a rare side effect—progressive scarring of the lungs—and required a double lung transplant. Bryson and his family traveled over 500 miles from Ohio to St. Louis, Missouri where he waited for 12 weeks in the PICU before he received his precious gift of life from Mason.

Bryson and his family traveled from Ohio to New Jersey to meet and say thank you to Mason’s family

It’s been six years since Bryson received his transplant and he has remained cancer free. He’s also the healthiest he’s ever been.

“It feels like Mason’s family and my family were meant to be in each other’s lives,” Katie, Bryson’s mother, says. “We at least hoped we’d be able to say thank you to the family who donated their loved one’s organs. We never expected to have such a close relationship, but now we’re all family.”

Bryson and Mason’s sister, Faith, pose with a photo of Mason

The Palmers’ stay as Home Cook Heroes was the first time they’d ever been to a Gift of Life Howie’s House-like facility. “During Bryson’s transplant journey, we traveled over 500 miles from home,” Katie says. “We were told we had to stay there but had nowhere to go. I slept in the hospital with Bryson and kept necessities in my car in the parking garage. My husband traveled back and forth from Ohio so he could continue working. We eventually did get an apartment, but there was no pantry, no meal offered every night, and we were completely on our own. It’s amazing that the House is a place to call home for so many people.” While cooking at the House, Bryson and his family were able to meet two other double lung recipients.

“It’s so nice to see this community,” Katie adds. “It would’ve been nice to have other families to talk to.”

The Hess and Palmer families in the Gift of Life Howie’s House Legacy Garden

We are so proud and humbled that our kitchen was a warm meeting place for such a meaningful moment between a donor and recipient family. These families are a true testament to how organ donation changes lives—and it was all possible because Adam and Kellie said yes to donation.

Through the generosity and support of our contributors, Gift of Life Howie’s House is able to provide a “home away from home” for transplant patients and their families.

Click here to donate today!

Tim and his wife, Donnamarie, in the Howie's House dining room.
Tim and his wife, Donnamarie, in the Gift of Life Howie’s House dining room

When Tim Adams was diagnosed with idiopathic pulmonary fibrosis, his pulmonologist told him he only had one year left to live.

However, three years and a new lung later, Tim is doing very well.

Tim came to seek life-saving transplant treatment at Temple University Hospital in Philadelphia. His wife, Donnamarie, stayed at the Gift of Life Howie’s House for two months during his treatment and visited him every day.

“Having my wife nearby was especially helpful to my recovery,” Tim says. “Having a place for your family to stay while having major, life-saving surgery is an incredible blessing.”

Tim and Donnamarie are from southern New Jersey. If it wasn’t for the House, they would’ve had to rent an apartment—a huge financial strain.

Tim was able to join Donnamarie at the House after he received his precious gift of life from a selfless donor. Having an affordable place to stay in Philadelphia was a huge help as he went back and forth from the hospital for rehab visits. He and Donnamarie still travel to Philadelphia for Tim’s follow-up appointments.

“The Gift of Life Howie’s House, the staff, and its offerings helped us so much,” Tim says. “We’ve met and befriended other lung transplant patients from around the country. We keep up with each other.”

At the House, it’s easy for guests, whether they’re a patient or caregiver, to connect with each other. Sharing stories and words of wisdom with people on the same journey, and with those who’ve had similar experiences, can relieve their worries and stress.

Tim calls his post-op time at the Gift of Life Howie’s House his “reintegration to society.” He explains: “I was able to settle down from ‘pure’ hospital life and be around other people whom I once avoided to prevent getting sick because of my suppressed auto-immune system. At the House, other people understand post-op patients. You can come back into the world and still have your safe space.”

Now, one year post-transplant, Tim tells everyone he can about the Gift of Life Howie’s House and how it has helped him. He also joined the Board of Directors of the 2nd Wind Lung Transplant Association dedicated to supporting lung transplant patients.

“I tell everybody I know about the House. If I could, I’d run an ad in the NY Times. Everyone should know about Gift of Life Howie’s House.”

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!

 

 

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