Maryam's Story
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Maryam was referred to Essential Care for Children
Mohtarama noticed shortly after the birth of her daughter Maryam that there was something to be concerned about – she was behaving differently than her other two children had. Multiple emergency room visits led nowhere, until the doctors saw Maryam experience a seizure. Once Maryam received an MRI, it showed her Corpus Collosum – a bundle of nerves that connects the two sides of the brain - was not there. The absence of this leads to issues such as developmental delays and seizures. With this discovery, Maryam was referred to Essential Care for Children.
"Maryam has been impactful in many ways. People's experience with illness does not just occur in episodes in the Hospital, but it is lived within their lives and within the context of their families” ~Chris Kerr MD PhD CEO and Medical Director - Hospice & Palliative Care Buffalo
Maryam frequently visited the emergency room for various respiratory illnesses
“Her primary physician recommended her to the Essential Care for Children program, our home-based palliative care program, to keep her at home as much as possible, providing the family with education and guidance. Unfortunately, Palliative Care is not something that is recognized by all insurance providers and resources. The soul reason that our program has been able to flourish and grow over the years has been based on the generosity of the community.” ~Kellyn LaLiberty RN, BSN, CHPPN – Director of Essential Care for Children
I remember that her nurse was literally a text away
“When you have an angel like Maryam, you need a support behind you, you need a family behind you. There was a time where we did have to call in the middle of the night and we were very scared about the situation that Maryam was going through. I remember that her nurse was literally a text away. As soon as we texted her, she gave us a call."~Ahsanal Hague – Maryam’s Brother
Working together with community providers to keep their child healthy and at home
“I think the biggest gift that Essential Care for Children has provided to Maryam’s family is simply allowing them to remain cohesive at home, they don’t have to pack up things in the middle of winter, the middle of the night, to try to head out. It’s much easier for us to come out and do an assessment and work together with community providers to keep their child healthy and at home.” ~Samantha Urtz, RN, BSN - Essential Care for Children
