Guest Stories
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.”
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.”
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.