A Journey of Hope (Johanna’s Story)

I remember well the first time we met Maya in the playroom at the Institute for Neurology and Neurosurgery at Beth Israel North. Our local pediatric neurosurgeon out on Long Island had referred my youngest daughter, Johanna, for consultation with Dr. Jeffrey Allen and the late Dr. Fred Epstein. We were newly seasoned parents; Johanna having had six brain surgeries before she turned a year old, the first one to resect a brainstem mass when she was a 12-week old infant. She needed a shunt placed before she was four months old.
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That first year, November 1996-97, was a blur as we balanced raising three older children (3, 6 and 9) and caring for our critically ill baby. But New Year 1998 rang in with a bang as we rushed Johanna to the ER with signs of pressure building, only to find out that she had multiple bleeds in her brain. After undergoing an MRI, she was diagnosed with multiple cavernous angiomas—benign lesions that multiply, hemorrhage, and grow. The only cure was surgical resection of troublesome lesions—an approach that would lead to multiple craniotomies, complications, strokes, and seizures for our little girl.

Meeting Maya Manley was a godsend for my husband and me and all our four kids. (We kind of traveled as a pack.) She introduced us to other families and took all our kids under her capable care as we met with the doctors to discuss this new diagnosis and surgical plans. Our kids—my son and his three younger sisters—all loved Maya. She made them feel welcomed and important and she was interested in their lives outside the whirl of hospital stays and surgeries. Maya helped us all feel better about this crazy new life we now lived and creatively helped us to forget about the trials by offering a cup of tea, an attentive ear, and chocolate!

Years later and after a diagnosis of a rare genetic disease—CCM3—we divided our time and Johanna’s care between NYU and a local hospital on Long Island. The kids loved our trips to NYC the best. The patients and families, nurses and some doctors came and went, but one of the constant joys in this walk has been Maya’s smiling face in the playroom and the wonderful support we’ve received from Making Headway Foundation.

Founders and friends, Maya and Edward Manley, are among the most gracious and caring people I have ever met. Through the years, our family has participated in field trips like the cruise, theater performances, parties and fundraisers, which all helped to connect us to others who were on a similar journey. The families, the Manleys, the staff, and volunteers of Making Headway all made us feel normal and welcomed, reminding us that we were not alone.

Over twenty years and a hundred surgeries later, Making Headway is still making a difference in our lives. As the gap widens between Johanna’s chronological and developmental age, there are a few things that remain the same. Maya’s fun projects and caring presence (and chocolate!) are among our sweetest consolations. And then there is always—Maya’s smile.