SCHENECTADY – The COVID-19 pandemic has restricted the ability of Make-A-Wish in northeast New York to fulfill travel-related requests from families of the critically ill children the organization serves.
But Make-A-Wish can fulfill most other wishes, like that of Jaxon Monlea, an 8-year-old city boy who was born with a rare heart defect.
After Jaxon asked for a tree house in the back yard of his home near Hillhurst Park, three private sponsors joined Make-A-Wish of Northeast New York to help make that dream come true.
They built him an elaborate, two-story cedar tree house with carpeting, a desk, a beanbag, and a mattress on the upper level.
Jaxon’s mother, Ashley Monlea, fitted the dig with a bell for room service.
The tree house and pint-sized picnic table are on a wraparound deck supported by solid 6 x 6 wooden posts 4 inches Feet in the ground.
Jaxon says he enjoys playing imaginative games with his friends in the tree house or on his swing.
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” for Project co-sponsors BBL Construction Services, Curtis Lumber and Delaware Engineering DPC who participated in the recent reveal of Make-A-Wish’s project on Jaxons b. participatedirthday last month.
Jaxon, who today is in good health apart from some stamina issues, proudly exclaimed that he wears a purple belt in taekwondo and showed his fondness for climbing the treehouse, which has several features to satisfy the boy’s athleticism .
It has a seven-rung ladder, a slide, a climbing wall, a rope tied to a tree, and a cargo net. For his less nimble tree guests there is 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 in 3,841 babies born in the United States each year.
Essentially, the left side of Jaxon’s heart did not shape properly when it developed during his mother’s pregnancy.
Left hypoplastic heart syndrome affects a number of structures on the left side of the heart that do not develop fully, resulting in an underdeveloped left ventricle, small or misshapen mitral valves, and an underdevelopment or lack of size of the ascending part of the aorta that leads to the center Disease control and prevention.
In a baby without a congenital heart defect, the right side of the heart pumps oxygen-depleted blood from the heart to the lungs.
The left side of the heart pumps oxygenated blood to the rest of the body. When a baby grows in the womb during pregnancy, there are two small openings between the left and right sides of the heart. Usually these openings close a few days after birth.
In babies with hypoplastic left heart syndrome, the left side of the heart cannot properly pump oxygenated blood to the body.
Shortly after a baby with the syndrome is born, several surgeries are required in a specific order to increase blood flow to the body and bypass the poorly functioning left side of the heart. The right ventricle becomes the body’s main pumping chamber.
The operations do not cure the syndrome, but they do 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 bidirectional Glenn shunt procedure, creates a direct connection between the pulmonary artery and the vessel that returns deoxygenated blood from the upper body to the heart. This reduces the work of the right ventricle by allowing the blood returning from the body to flow directly to the lungs.
The third operation, a Fontan procedure, connects the pulmonary artery and the vessel that returns deoxygenated blood from the lower part of the body to the heart. This allows the rest of the blood that comes back from the body to flow into the lungs.
Once this process is complete, oxygen-rich and de-oxygenated blood no longer mix in the heart and an infant’s skin no longer looks bluish.
All of Jaxon’s operations were performed at the Philadelphia Children’s Hospital. His primary cardiologist works in St. Peter’s Medical Building in Albany.
According to his mother, Jaxon’s progress will be monitored into adulthood.
Make-A-Wish America is following Medical Advisory Council guidelines, according to McGuire, so its ability to fulfill around 90 to 100 wishes a year has declined significantly during the pandemic.
But requests that are not a trip can be approved at this time.
“Whether it’s a tree house, a shopping spree, a play set, a sunken pool, or a child who wants to give something back – or something else in a child’s imagination – we will grant those wishes, and hopefully soon enough, when things work out again normalize, we will return 100%, “said McGuire.
The organization is pleased that the pandemic has not negatively impacted fundraising efforts. There have been fewer donors, but those who donate give larger amounts of money, McGuire said.
“Even if we are not currently fulfilling as many wishes as in previous years, we need these funds because of our wish backlog,” he said. “We will need these resources to fulfill these wishes.”
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