Earlier this week we spoke with Donna Freitas and her family in Carver, Massachusetts. Donna and her husband Dave have three children Danielle 31, Deanna 17, and David 15. Five years ago a fully healthy family was faced with a difficult new reality. Both Deanna and David started becoming increasingly sick for no apparent reason. After countless tests and doctor’s appointments, it was confirmed that both Deanna and David have MELAS Syndrome.
MELAS stands for mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes. There is currently no cure for this genetic condition and patients routinely experience mild to severe seizures, fatigue, muscle pain, and strokes due to the body’s high levels of lactic acid.
In the months and years that passed, the children’s conditions progressed and David suffered an intense seizure in August 2012 which cost him his eyesight and significantly reduced his mobility. “We were in and out of the hospital at that time, we started to call it Hotel Children’s,” said Donna as she recounted the frequent trips to Children’s Hospital in Boston. “We just kept telling our children, despite any limitations or challenges; you have to be the best you can be. You need to play the cards you were dealt.”
From left to right: Deanna Freitas, Diana, and Dave Freitas, Danielle, Madison, Mikey, and David Freitas
Donna also elaborated on her and her husband’s experiences as caregivers. “The children have no idea what is around the corner. Unlike other diseases, MELAS can escalate and change in an instant,” she said. “You live and do what you have to do for your kids. It is very day-to-day, any given afternoon you could face two kids in the hospital.”
On top of the constant hospital stays, Donna and Dave were faced with losing their home and had to give up their own bedroom and sleep in the living room while David, Deanna, and their medical equipment took up the master bedroom. It was time for a change.
Habitat for Humanity, the Town of Carver, Sam’s Club, 101 Mobility® of Massachusetts, and Boston Community Capital have teamed up to help this incredibly resilient family. This spring, Boston Community Capital’s SUN Initiative refinanced the Freitas’ mortgage and saved their home from foreclosure. Jim Middleton from Habitat for Humanity and Jack Hunter from the Town of Carver also stepped in to help fund and execute a home renovation for the family which included hardwood floors, repainting, and separate bedrooms for the family members. 101 Mobility® of Massachusetts and Harmar are working together to provide David with safe access within the house via a vertical platform lift. Lastly, Sam’s Club will be arranging for a hotel stay while the heavy remodeling is completed. “The community has really come together for us and now our family is closer than ever,” said Donna.
The renovation is set to be completed in October and we cannot wait to share the outcome. We couldn’t think of a more deserving or more determined and dedicated family for this project. We greatly admire the Freitas family and hope to take on each day with the same boldness as Danielle, Deanna, David, and of course their fearless parents Dave and Donna. “It doesn’t matter about the others, we keep telling them. The cards dealt with you have not been fair, but at the end of the day, you have to deal with what you have to deal with.”