DUPONT — In just 21 months of life, Malia Uscanga has already beaten the odds.
The young Dupont resident was born in December 2016 in North Carolina after a normal birth and a healthy pregnancy.
When she went home, though, her mother, Jennifer Uscanga, knew there was something wrong.
“She cried all the time,” Jennifer said. “She was in pain.”
At seven-weeks-old, Malia suffered multiple seizures and was flown by medical helicopter to a large hospital where she was diagnosed with Neurofibromatosis Type 1, with multiple tumors growing throughout her body.
She also had a stroke because the tumors in her neck crowed her blood vessels.
Doctors offered little hope and discharged her after a week, to hospice care.
Now, nearly 2 years old and defying the odds, Malia has a daily routine, home health nurses who love her, a myriad of toys and a loving family.
Although her condition is progressive and cannot be cured, Malia enjoys playing and spending time with her family.
The one thing she doesn’t have, however, is a real home.
Jennifer Uscanga said the family moved back to the area after realizing doctors in North Carolina were conferring with doctors at Children’s Hospital of Philadelphia.
“I grew up here and there were doctors here who knew about her condition, and I thought it would make sense to move back,” Jennifer said.
Jennifer and her husband Hector, along with two older children, moved into the home of Jennifer’s 84-year-old grandfather in January, believing the housing situation was just temporary.
Hector is working upwards of 80 hours a week in order to keep the family afloat and save for the future.
Even though the couple has enough money for a down payment on a house and Hector has a steady job making decent money, Jennifer soon realized there are multiple obstacles in the way of finding a home for Malia, who needs modifications that will allow her to get in and out of the house with a bedroom on the first floor.
The family now lives in a home on the Pittston Bypass with a limited outdoor area. For Malia to spend time outside, they need to get in the car and go to a park or open area, rather than just opening the door of their home to a ramp that will take her to a backyard where she can feel the sun on her face.
Jennifer said Malia loves being outside and breaks into a big smile when she feels a breeze on her face.
Malia, who is blind in one eye and hearing-impaired, fully enjoys life evidenced by broad smiles and enthusiastic play.
Even play, though, comes at a price, with educational toys modified for her condition costing upwards of $200.
“Our family needs a home where we can enjoy our time together as a family and improve the quality of Malia’s life,” Jennifer said. “We are not asking for anything fancy, just a place that is accessible to call home. Malia’s condition is so complex and we are living our lives commuting to doctors’ appointments or having to stay in hospitals because of constant complications.”
Jennifer, who has two other children, Kylea, 8, and Anthony, 10, often goes to bed at night worrying about all her children.
“I’m just hoping that they can have what they need to lead happy lives,” she said.
She is hoping for help in the form of a financial donation, a donations of construction services or even assistance in accessing resources.
“Malia deserves a home that will bring her joy,” Jennifer said. “And, right now, she doesn’t have that.”
