Parenting is a demanding job that presents challenges on a daily basis. But the stress of caring for a child with chronic illness can be even more difficult to manage. Alex Dwek, the founder of The Maya Rose Project in New York City, has a deep understanding of how much strain a childhood disability can put on parents. His 8-year-old daughter has suffered from undiagnosed developmental disabilities for most of her life.
When Alex took Maya to the doctor to address concerns about her development at eight months of age, it was just the beginning of years of medical appointments, countless tests, and other demands on his family. These financial and time demands caused immense stress for the single father, who welcomes volunteers and donations at The Maya Project. If your child has a chronic illness, don’t be afraid to ask for help from other family members, who can provide transportation to doctor’s appointments, pick up prescriptions, and even serve as caregivers to give you a few restorative hours. By managing your own stress, you can provide even better care to your child.
Beyond the strain of resources, though, Maya’s chronic illness taxed his emotions. He worried about the future for both himself and his daughter if the illness continued as a medical mystery. To help manage the stress, he empowered himself through education, learning everything he could about chronic childhood illness. Parents can take the same approach by asking their doctors every question that comes to mind and joining support groups to seek guidance from other families.
The Maya Rose Project is on a mission to get Maya a diagnosis and a cure for her chronic illness. If you would like to volunteer or make a donation to the New York City organization, email Alex directly.