Despite being born at 34 weeks, Alejandro was normal size and had no lingering medical concerns. Seven months later…he was on his way to the United States.
“As his mom, I could feel it,” said Adriana. “Something was wrong.”
Doctors in Guatemala ran tests and found an abnormality on his brain, but they did not have the necessary technology to provide a diagnosis. After traveling to Boston for answers, the family received one: congenital disorder of glycosylation, an extremely rare genetic condition which can negatively affect several different organ systems. It affects only a small number of people around the world. And in Alejandro’s case, it was attacking his lungs.
Doctors in Boston referred the family to Mayo Clinic…because Mayo Clinic has the world’s leading authority on CDG and is conducting more research. And the equipment Alejandro needs for his respiratory system is readily available, which proved vital.
When Alejandro turned one year old, he developed more problems in his lungs. He suffered from multiple illnesses, including pneumonia, more severely and more often. The family returned to Rochester every six months for his follow-up appointments.
“It was a challenge – financially and emotionally – every time we came,” said Adriana. “Flying from Guatemala, staying in a hotel…it was very expensive.”
They were informed their most-recent visit would be long-term: Alejandro needed hip surgery. That was when the family learned about the Ronald McDonald House of Rochester.
“We assumed it was only for very long stays,” Adriana said. “When we were told we are eligible…I was so thankful. It’s such a blessing.”
“It’s not only about the money and his health – it’s everything.”
When the family arrived from Guatemala, they received an activity bag and food bags – practices recently developed by the House to better serve families beyond its four walls. Adriana said the activity bag was especially impactful for their daughter, who was traveling as well.
“Daniela was so excited,” said Adriana. “She couldn’t wait to move in.”
After 54 nights at the Ronald McDonald House of Rochester, Alejandro and his family returned home. Adriana and Daniela were with Alejandro all 54 nights, while his dad traveled back and forth for work and his grandmother and aunt visited from Guatemala for a short time. The entire extended family is invested in his journey.
“My mom felt blessed when she walked into the House,” Adriana said. “She said, I am happy that my grandchildren and my daughter are in a perfect and safe place; I have no worries because they are staying at the House.”
“The House gave us an unbelievable gift: we have always been together as a family.”
Adriana said their experience was incredible. Activities, food, friendly faces—the House has everything a family needs. But the House provided so much more.
“Alejandro can’t walk or talk, and he doesn’t always understand things,” said Adriana. “But he is a person. The staff and volunteers know him. He is included in activities and events. The House treats him how he deserves to be treated.”
“As a mom…it means more than you could ever know.”
Alejandro and Daniela had birthdays in Rochester. The House threw parties for both, and Daniela even invited House volunteers to the celebrations. Adriana said volunteers connected with her family and “absolutely changed their lives.”
Adriana said the House makes it possible to fully focus on Alejandro’s health. Sometimes it is late, and everything is closed…but the House has everything the family needs. Generous supporters make it possible for the House to provide for children and families.
“Thank you to everyone who donates to the House; without you, we couldn’t have this experience,” said Adriana. “We read the plaques – names of people who support the House – they are angels in the kid’s lives. All the families are in a hard situation, but we don’t have to worry about anything except our child’s health. Because so many people are helping us.”
“All I can say is…thank you.”
The journey is not over – Alejandro will need care for the rest of his life and will need to return to Mayo Clinic every six months to track his progress.
“We have a long way to go, but we know we have a home in Rochester,” Adriana said. “The Ronald McDonald House.”
