On Aug. 26, 2016, Lola Muñoz was diagnosed with a diffuse intrinsic pontine glioma, an inoperable brain tumour. DIPG affects children almost exclusively, with a 0% survival rate and an average prognosis of nine to 12 months. Only 10% of DIPG patients survive two years.

When their daughter’s left eye initially stopped tracking along with her right, Melissa and Agustin Muñoz thought the problem was merely a lazy eye. That was until Lola had trouble moving the left side of her face – a wrenching series of doctors appointments, specialists and scans upended their world in August 2016 – Lola had a very rare brain tumour.

Several months after learning she had a rare brain tumour — and several more before she would turn 13 — Lola Muñoz made a decision to enter a clinical trial testing whether two chemotherapy drugs might be safe for patients with DIPG, and drove from Upstate New York to Tennessee with her mother.

Diffuse intrinsic pontine gliomas (DIPGs), striking in childhood at the base of the brain, are especially aggressive, difficult to treat and deadly. Lola opted to take part in the trial at St. Jude Children’s Research Hospital in Memphis with a singular hope.

I’d rather help find something for the other kids that will get DIPG than to not help at all,” she explained.

Lola’s parents and many other individuals tried to maximise the good days, particularly after Lola, exhausted by the chemo, withdrew from the clinical trial. She wanted to return to school and some semblance of living — joking with friends, dancing to music. By May 2017, she had regained enough strength to do a “Defeat DIPG Superhero” 6K, sprinting off at the start. The family took their annual summer camping trip, this time to Niagara Falls.

But in August, new scans showed her tumour was again growing. Lola began both radiation and chemo.

Lola Muñoz passed away on April 2, 2018.

For nearly a year and a half, photojournalist Moriah Ratner followed Lola and the Muñoz family on a journey marked by pain as well as laughter, fear as well as joy, anguish and finally peace. Her camera captured a girl dealing with inevitable loss while trying resolutely to live.

Lola’s story has been published by The Washington Post and National Geographic. Ratner talked to NPR about the challenges of photographing a long-term project so early in her career and the toll it took on her.

Read the article, “Lessons In Life And Death From 12-Year-Old Lola

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