Guest Stories
Dupigny Family, Antigua
On April 10th 2010, two twin girls were born, Aida Faith Dupigny and Akira Hope Dupigny. But it was not until 13th April, 2010 during a routine examination of Aida, a heart murmur was discovered. She was kept at the hospital under observation and was discharged the following day.
“We thought that all was well…………. we were wrong, approximately 3 weeks later Aida was readmitted to the hospital. Things started to take a different turn; Aida was slowly losing her strength. On June 2nd 2010 she went into cardiac distress and was airlifted to a children’s hospital in Martinique. She was examined by a team of specialists, and was diagnosed with a cyanotic Congenital Heart disease (Severe Ebstein’s Anomaly, Pulmonary Atresia). The doctor told us there’s no hope, that our little daughter would be dead within 4 days. His words were “I know what I’m saying, I wish there was something else I could say to you, she is not going to make it so you should move on with your lives together with your other daughter (Akira Hope Dupigny).”
Aida is destined to live. She is now 11 and celebrated her 11th birthday on April 10th, 2021. Aida sees a cardiologist yearly at Boston Children’s Hospital. Her last trip July, 2021 reveals that the left side of the heart is now a bit enlarged would need to proceed with Fontan surgery in the next 3 years to improve her oxygen saturation and blood flow.
“We are thankful to Hospitality Homes for making our stay possible and less stressful this time around. We reached out to them last minute and within a short space of time a great financial burden was lifted off my family’s shoulder. We are thankful to God for them for such caring people. Our family will forever be grateful to Hospitality Homes.”
Stokes Family, Illinois
Tenleigh Stokes was born 8 weeks premature in 2012. She had multiple bone deformations, including missing ribs, scoliosis, and an abnormally small chest wall. She was eventually diagnosed with Thoracic Insufficiency Syndrome, a rare condition that affects less than 4,000 children in the U.S.
To treat Tenleigh’s condition, doctors insert expandable rods or VEPTRs (vertical expandable prosthetic titanium ribs) into her torso. The system is meant to straighten her spine and expand her chest. Tenleigh will need invasive surgery to expand the system every 4 to 6 months until she is done growing.
In 2020, after a series of complications, Tenleigh’s family learned that the care she so desperately needed was offered at Boston Children’s Hospital. She and her family traveled to Boston so she could receive Halo Gravity Traction treatment. She spent 39 days in the hospital as doctors gradually added weight to a pully system that slowly lengthened her spine.
Hospitality Homes has placed the Stokes family with housing for nearly 70 nights and counting in donated apartments.
“Hospitality Homes takes away a major burden. Without their support, we would be worried about how to find somewhere safe and affordable to stay. And they make Boston feel like home while we are away from home because they take care of you while you’re there, too,” says Tenleigh’s mom, Haylee.
Durfee Family, Maryland
Addie has Short Bowel Syndrome and receives ongoing care at Boston Children’s Hospital. The family regularly stays with Hospitality Homes while they’re here.
“The first time we stayed in Boston, we stayed at a hotel with a medical discount for like $300 per night. There were other times we tried to find hotels, but because of sport events or conferences, the city was 80% sold out and we could not find a room for less than $550,” Stephanie says.
“We knew we needed to come to Boston to see experts on this rare disease. Hospitality Homes made our ability to travel possible. They make a very stressful time much easier.”
Caminos Family, Maine
The Caminos family first traveled from Central Maine to Boston for their 8 year old son’s epilepsy presurgical evaluation at Mass General. He was diagnosed with a brain tumor at age 2 and has since had 3 craniotomies, 10 months of chemo, and 37 rounds of proton radiation. He was diagnosed with epilepsy shortly after his first surgery and continues to struggle with daily seizures.
“When we found out about Hospitality Homes, I felt a huge sense of relief. Boston is an expensive city, and it seemed overwhelming trying to consider our housing options as my husband and I traded off duties at the hospital with our son. Hospitality Homes provided us a low cost comfortable home base so that we didn’t have to worry about how to afford housing or finding something appropriate nearby the hospital. In addition, having a full kitchen meant we were easily able to accommodate our special dietary needs. That was also a very big stress reliever. The three words I would use to describe Hospitality Homes are Godsend, Blessing, and Lifesaver. Without hospitality homes, we would have had go into into further debt to find housing during our son’s stay, and we would have endured a lot more stress and anxiety. Being able to have a home base nearby the hospital with many of the comforts of home was priceless. We are grateful beyond words.” says Michelle.
Watts Family, Maryland
Avery Watts suffers from a rare disease, homozygous familial hypercholesterolemia, along with several cardiac issues. Her family sought medical help for her in several cities, from Baltimore to Wilmington, DE to Philadelphia.
But when they found out that Avery needed open-heart surgery, they knew Boston Children’s Hospital was the place they needed to be. Avery’s mother, Michelle Watts, had been doing research on surgeons and she knew that Dr. Christopher Baird at BCH was one of the few pediatric surgeons doing the Ozaki procedure Avery needed. Dr. Baird was the first thoracic surgeon ever to perform the procedure.
“From the moment we arrived at our Hospitality Home (away from home), we felt welcome and were greeted with masks from Love Your Melon. The facilities were modern, clean and gave us a sense of safety. It felt like home!” Michelle says. “The Hospitality Homes contact was very warm and compassionate, anticipating our needs and following up during our stays to ensure every “i” was dotted and every “T” crossed. As compared to staying at a hotel, the costs were affordable.”
“Finding affordable housing that is also clean and safe in the downtown Boston area is extremely challenging,” Michelle says. “Hospitality Homes has been a godsend each time we have needed to travel to Boston for medical appointments at Boston Children’s. This is a very important service to families with children suffering from serious medical conditions.”
Brown Family, South Carolina
Deiadra and her baby, Autumn, originally came to Boston in October of 2020 for Autumn’s esophageal surgery. Not knowing fully what was wrong with Autumn.
“When I was told in September that Boston was her best chance, I didn’t think twice about them getting her here. Once we got here everything unfolded. We found out that Autumn’s heart wasn’t strong enough to endure Esophageal surgery. But wait that wasn’t even it. We then found out that her bilirubin level was a nine, and until it reached a normal level, which was a 1, they were unable to even give us a date for surgery,” Deiadra says.
“Seeing how my mom had only been able to come for two weeks and I was in this big cold city alone staying at a motel that I had to check out of soon. Crying I called my mom and her words to me were “we’d figure it out”. That same night I got a text from Hospitality Homes offering an apartment walking distance from the hospital. You have no idea how that lifted so much weight off my shoulders. Knowing I would still be able to be here with my baby, even if I was alone.”
“The three words I would use to describe Hospitality Homes are: amazing, helpful and caring. I really do appreciate everything that you have done for me and my family. Words can’t even begin to express how thankful I am.”
Camacho Family, Florida
Martin has congenital heart disease and has had three open heart surgeries at Boston Children’s Hospital. The Camacho family has stayed with Hospitality Homes six times with three different hosts.
“Hospitality Homes is an amazing service and provides offerings to help families when they need it the most. We were able to stay in Boston as a local,” Martin’s mother Gaby says. “The room was perfect and meeting our host family gave us a lifelong friendship.”
They have stayed with Hospitality Homes a combined total of 53 nights, including a COVID-safe stay with a host family during the pandemic.
“Thank you for helping us to stay in a warm bed with our family to endure hard times like this. We will forever remember this time and our friends in Boston,” Gaby says.
Christian and Family, Oklahoma
“It was such a blessing when Boston Children’s Hospital agreed they could help our son. However, we were very stressed about the logistics of traveling from Oklahoma. Every hotel was booked due to graduation season or close to $500/night,” the family says.
“We consider the very act of opening up your home to strangers going above and beyond. But our host family takes it to an entirely new level. They sincerely mean ‘our home is your home.’ From sweet welcome signs, grocery treats, dinner parties, birthday celebrations, books, toys, and mail delivery, our hosts make every attempt to create an environment that’s not solely focused on Christian’s medical care. Words do not adequately express how much we appreciate our host family and the Hospitality Homes program.”
The family feels that Hospitality Homes played an essential role in allowing them to bring Christian to Boston for the medical care he so desperately needed.
“Hospitality Homes made it possible for Christian to receive his life saving surgery and treatment. Thank you for organizing and making our trips to Boston Children’s Hospital a reality. We couldn’t do it without the generosity of every member of the Hospitality Homes staff,” Christian’s family says.