October 2, 2013
The saying ‘Life is a journey’ is true for all of us. But when you are a parent raising two medically fragile children along with a typically developing child, that journey can take you places you never imagined.
Meet Mark and Brandy Costello, parents to three amazing boys: Landon, 7, Cullen, 4, and Carter, 2. Both Landon and Carter are clients with Epic’s Addison office.
When Landon was born, he was diagnosed with Haddad syndrome, which includes congenital central hypoventilation syndrome (CCHS) and occurs with Hirschsprung disease. CCHS affects Landon’s ability to breathe on his own and required him to get a tracheostomy at the tender age of one month.
With the help of diaphragmatic pacers that were implanted in 2010, Landon is now an active 7-year-old boy who likes to walk, talk, jump and play, and no longer needs to be connected to a ventilator all day in order to breathe. He also participates in a pee wee bowling league with his brother, Cullen.
As an infant, Carter was diagnosed with SMA Type 1 and severe osteopenia (brittle bone disease). Although Carter is unable to move, his parents have worked with him to communicate with his eyes. He operates an eye-gaze device that allows him to control programs on a computer as well as to call for his parents or brothers.
While life is far from typical for the Costellos, they certainly do what they can to make it as normal as possible for all three boys.
When the family moved into their new home, the boys were excited that they got their own rooms. Plus, they do not have any medical equipment in their rooms because the Costellos created a medical supply room to house everything. Landon even decorated his room in camouflage, which happens to be his favorite pattern.
The Costellos continue to face life’s challenges head on, including the recent discovery that Landon has stage IV cancer.
In July, Landon was diagnosed with neuroblastoma that developed behind his heart and spread into the bones in his chest and spine, and into the bone marrow. He has already started chemotherapy and radiation, and will need a bone marrow and stem cell transplant.
“Landon is a fighter,” said Brandy. “After he was diagnosed with cancer he said, ‘Get this out of me. I’m ready to fight.’”
The entire Epic team is right behind you, Landon, cheering you on every step of the way!
We are grateful to the Costellos for sharing their story with us. For more information about this incredible family and to view additional family photos, visit the Dallas Morning News’ website.