My sister, my inspiration

Listen to Colton and Lena talk about their relationship. 

My little sister, Lena, was born in Denver, Colorado, on Feb. 24, 2000. My recollection of that day and the weeks that followed is hazy — not only because I was just six years old, but also because I was being shuttled between several relatives while my parents attended to some “medical problem” my sister had, which I couldn’t really understand.

The words spina bifida didn’t mean much to me, but between my parents’ solemnity and the fact that — as it was explained to me — the doctors needed to cut into my sister’s back with a laser, I started to get an abstract, naive idea of the seriousness of the whole thing.

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Lena with her adoring big brother, Colton.

There is currently no cure for spina bifida. From day one, my little sister has faced difficulties most of us will never have to confront. Things most people take for granted can be made magnitudes more complicated by spina bifida. After an initial detethering surgery, Lena essentially had no complications from spina bifida for the first few years of her life, and even when some urological issues did eventually arise, they were able to be kept in check.

For many years, everything that had plagued the first weeks of my little sister’s life had become virtually invisible to those who didn’t know her otherwise. She took up swimming, lacrosse, soccer, theatre and cultivated the surreal sense of humor she carries with her today.

My sister is lucky to have been born in the age of such advanced medical technologies. If Lena had been born 50 years ago, the effects of her condition would have been catastrophic.

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Lena and Colton in Colorado, before the family’s move to Massachusetts.

In 2007, my father was deployed to Iraq and we moved from Colorado to Massachusetts to be closer to my mother’s side of the family. Four years later, when Lena was 11, her problems came back in full force. It ended up that we were quite lucky to have moved so close to Boston Children’s Hospital.

At the beginning of my senior year of high school, Lena had the first of what were to unfortunately be many spinal surgeries to correct a plethora of problems, including three detethering surgeries three years in a row and a seemingly never ending series of attempts to correct spinal fluid leakage.

Many of these surgeries took place while I was off at college, and it broke my heart to be so far away from my family.

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At Colton’s college orientation, Lena’s knees hurt if she walked too much, so Colton carried her around campus on his back. The family would find out weeks later that Lena needed another neurosurgery.

Today, most of Lena’s neurological problems have stabilized, but her growth spurts have worsened some orthopedic and urological issues. Adolescence is hard enough when not compounded with health issues, yet my sister proves to be utterly indestructible, never losing her sense of humor for a second, never letting her medical hardships define who she is as a person.

Even when rendered immobile and confined to a hospital bed in the weeks following surgery, even when stays at Boston Children’s became more routine than stays in her own bed, Lena would find ways not just to keep herself occupied, but to put a smile on the faces around her. Once when Lena was coming out of a major spinal surgery, a nurse entered her room. Completely drained of energy and still feeling the effects of anesthesia and painkillers, Lena stunned everyone by asking how the nurse was doing before the nurse had a chance to ask Lena the same.

At her most basic, instinctual level, my sister is oriented purely towards the betterment of others, refusing to see her medical problems as simple obstacles, but rather as tools that enable her to deeply empathize with all those afflicted with disease.

Though time has become a serious luxury (between school, activities and medical care), Lena is always determined to give back to those around her — working hard as a member of the Boston Children’s Teen Advisory Committee and fundraising for the Spina Bifida Association of Greater New England.

There is no better word to describe my sister than selfless. She is an absolute inspiration to me and to everyone who has the privilege of meeting her.

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Colton and Lena today, at home in Massachusetts.

Learn more about how Boston Children’s treats patients with spina bifida.

Colton Williamson is a 2016 graduate of the University of Notre Dame, majoring in Film, Television, and Theatre. His sister Lena has lipomyelomeningocele – a typically more mild form of spina bifida – and is a patient of many Boston Children’s physicians, including Dr. Carlos R. Estrada, Jr.Dr. Lawrence Ira Karlin and Dr. Mark Proctor. She will begin 11th grade in the fall.