SCHENECTADY — The COVID-19 pandemic has hamstrung Make-A-Wish of Northeast New York’s ability to grant travel-related requests from families of the critically ill children the organization serves.
But Make-A-Wish is still able to fulfill most other requests, such as the one from Jaxon Monlea, an 8-year-old city boy who was born with a rare heart defect.
After Jaxon asked for a treehouse in the backyard of his home near Hillhurst Park, three private sponsors joined Make-A-Wish of Northeast New York in helping to make the dream come true.
They built him an elaborate, two-level treehouse made of cedar that has carpeting, a desk, a bean bag chair and a mattress on its upper level.
Jaxon’s mother, Ashley Monlea, equipped the digs with a bell for room service.
The treehouse and a pint-sized picnic table sit on a wraparound deck that’s supported by massive 6-by-6 timber posts set 4 feet into the ground.
Jaxon said he likes to play imaginative games with his friends in the treehouse, or on its swing set.
Make-A-Wish of Northeast New York spokesman Mark McGuire called it “nicer than my first house.”
Ashley Monlea said she was surprised and “super grateful” to project co-sponsors BBL Construction Services, Curtis Lumber and Delaware Engineering D.P.C., who joined Make-A-Wish’s recent reveal of the project on Jaxon’s birthday last month.
Jaxon, who is in good health today except for some stamina challenges, proudly exclaimed that he has a purple belt in taekwondo and showed off his penchant for climbing on the treehouse, which has multiple features to satisfy the boy’s athleticism.
It has a seven-rung ladder, a slide, a climbing wall, a rope tethered from a tree and cargo netting. For his less nimble tree guests, there’s a traditional 12-step staircase.
Jaxon’s condition is called hypoplastic left heart syndrome, a critical congenital heart defect that affects normal blood flow through the heart.
It affects about 1 of every 3,841 babies born in the United States each year.
Essentially, the left side of Jaxon’s heart did not form correctly as he developed during his mother’s pregnancy.
Hypoplastic left heart syndrome affects a number of structures on the left side of the heart that do not fully develop, resulting in an underdeveloped left ventricle, small or unformed mitral valves and underdevelopment or lack of size of the ascending portion of the aorta, according to the Center for Disease Control and Prevention.
In a baby without a congenital heart defect, the right side of the heart pumps oxygen-poor blood from the heart to the lungs.
The left side of the heart pumps oxygen-rich blood to the rest of the body. When a baby is growing in a mother’s womb during pregnancy, there are two small openings between the left and right sides of the heart. Normally, these openings close a few days after birth.
In babies with hypoplastic left heart syndrome, the left side of the heart cannot pump oxygen-rich blood to the body properly.
Soon after a baby with the syndrome is born, multiple surgeries done in a particular order are needed to increase blood flow to the body and bypass the poorly functioning left side of the heart. The right ventricle becomes the main pumping chamber to the body.
The surgeries do not cure the syndrome, but they help restore heart function.
The first surgery, a Norwood Procedure, creates a new aorta and connects it to the right ventricle.
Months later, a second procedure, a bi-directional Glenn Shunt Procedure, creates a direct connection between the pulmonary artery and the vessel returning oxygen-poor blood from the upper part of the body to the heart. This reduces the work the right ventricle has to do by allowing blood returning from the body to flow directly to the lungs.
The third surgery, a Fontan Procedure, connects the pulmonary artery and the vessel returning oxygen-poor blood from the lower part of the body to the heart. This allows the rest of the blood coming back from the body to go to the lungs.
Once this procedure is complete, oxygen-rich and oxygen-poor blood no longer mix in the heart, and an infant’s skin will no longer look bluish.
All of Jaxon’s surgeries were performed at the Children’s Hospital in Philadelphia. His primary cardiologist works out of the St Peter’s medical building in Albany.
Jaxon’s progress will be monitored into adulthood, according to his mother.
According to McGuire, Make-A-Wish America follows guidelines set by the Medical Advisory Council, so its ability to grant roughly 90 to 100 wishes per year is significantly down during the pandemic.
But non-travel requests can be granted at this time.
“So, whether it’s a treehouse, shopping spree, playset, in-ground pool or a child wants to give back — or anything else in a child’s imagination — we’re granting those wishes, and hopefully soon enough when things return to normal, we will be back to 100%,” McGuire said.
The organization has been pleased that the pandemic hasn’t negatively impacted fundraising efforts. There have been fewer donors, but the ones who are donating are giving larger amounts of money, McGuire said.
“Even though we’re not granting as many wishes at the moment as we have in years past, we do need those funds because of the backlog of wishes we have,” he said. “We’ll need those funds to make those wishes come true.”