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Read More About Ben
Posted in: Community
No Longer Alone
Hospice Provides Pediatric Care
In a slideshow she made for her son, Ben, Leah Schust captions his baby pictures: “I have been waiting for you my whole life… perfection ... your smile lights up our world.”
Ben was a happy, healthy baby. Around his first birthday, however, Leah noticed changes. He stopped smiling and lost his newfound developmental abilities. “He was disappearing into himself,” she remembers. The following month, Ben had his first seizure; soon there were hundreds every day. The following years were filled with countless hospitalizations, medications, EEGs, and misdiagnoses. After being told there were “few other options” for Ben, Leah and her husband, Brant, tried genetic testing. Finally, they found the cause of Ben’s seizures and developmental regression: a life-threatening mutation on the SCN2a gene. They were told that Ben was the only one ever to have that specific mutation; and that there’s no cure.
Today, just shy of his sixth birthday, Ben rarely smiles, is legally blind, non-verbal, and
cognitively under one year old. Brant and Leah both work fulltime to ensure that Ben has the health coverage he needs. All of their time and resources have gone into caring for Ben and searching for a way to save his life. Despite applying for medical assistance, social security, and “every single grant available,” they were unable to receive financial assistance and began planning to move to another state to be able to afford the care Ben needs.
And then, while fundraising last March, Leah was told to consider hospice care, learning that the criteria for pediatric care are different; and that aggressive, curative treatment can still be pursued. A hospice worker said the words she had been aching to hear for years: “We can help you.” Though Leah was skeptical and shaken – “hospice” seemed like such a scary word – she called Hospice of Frederick County and the next day staff was at her house offering support. It seemed to Leah too good to be true.
Now, diapers, medications, and medical supplies are brought to the house. The time and money saved is allowing them to stay in their home and to pursue new types of therapy for Ben, giving him an overall better quality of life. Hospice volunteers come and hold Ben – who communicates by cuddling – in the giant hammock Leah installed for him in the living room, sometimes for hours at a time. Ben loves music and particularly enjoys when volunteer Judy Williams comes to play guitar, or sometimes, to just sing and hum to him while they hold each other in the hammock.
The help of volunteers also enables Leah to do things that “never happened” before – things most of us take for granted, like sitting down to eat a meal. Hospice has brought other firsts too: Ben has a private-duty nurse at school; Leah and Brant have been able to go out on a date; Leah is pursuing a hobby; and now, their nurse, Katie, is working on getting Ben overnight care.
For years, Leah and Brant fought alone, they forged connections where they were told there were none, and they have made every imaginable effort and sacrifice to give their son the best care and prognosis possible. At last, because of Hospice, they have the allies they have so desperately been seeking. It is the family’s first semblance of normalcy in nearly five years, and, thanks to the help of Hospice staff and volunteers, they are able to spend quality time together as a family in a way they’ve never been able to before. “It’s huge,” Leah says, as she wipes away tears, “I don’t think I can explain in how many different aspects Hospice is helping us… It’s a really big deal. I’m so grateful. They gave me more than I could have asked for.”
Leah may not have the son she imagined, wearing a Little League uniform and playing with friends, but Ben “is so much better,” she says; “he’s amazing… to me, he’s perfect.” No longer alone, with the help of Hospice Leah and Brant can finally focus on what matters most: cherishing every moment with their amazing son.