Meet Lila

14-year-old Lila is a ‘girly girl’ who loves having her nails painted, listening to juicy gossip, and riding horses in equine therapy.

Lila’s family is well-practiced at managing her complex medical needs – she had a stroke before she was born, is non-verbal and is only fed through a g-tube. She was also diagnosed with quadriplegic cerebral palsy, dystonia, scoliosis and more.

More recently, after a period of high temperatures, lethargy, and abnormal blood tests, another diagnosis was added to the list…

Lila’s mom, Sarah, was driving her home from a bone marrow biopsy when she got the heartbreaking call – “We have the results… and you need to come back right now.”

Lila was diagnosed with acute lymphoblastic leukemia (ALL).

The news was made all the more terrifying by the potential complications posed by Lila’s other diagnoses.

During induction chemotherapy, Lila started cognitively declining. Her usual smiles, happy sounds, and excited kicks were gone. Sarah could tell she was in immense pain, but Lila's cries were silent.

Lila’s baseline ‘normal’ is different from everyone else’s, so it was difficult for her medical team to determine the degree to which the chemo was causing her rapid decline. From there, Lila’s recovery was slow, but her smiley self returned with time.

Sarah lifts her spirits with goofy renditions of ‘Ain’t No Mountain High Enough’, her aunt watches TV shows and reads books with Lila, her Grandma Cookie keeps Lila’s nails painted, and her stepdad Brandon only has to enter the room for her to light up with joy.

Unfortunately, Lila’s future treatment plan is still unclear. Doctors were worried about the impacts of more chemotherapy, so she is currently undergoing immunotherapy treatment.

If this doesn’t work, Lila will be out of options. Sarah is channeling the uncertainty of her daughter’s prognosis into something positive, by telling Lila’s story.

In her words, “My hope is that doctors can learn from her, and if someone like her is diagnosed in the future… they can say we know what to do because of Lila.”

Lila, your story and smile have touched our hearts deeply. This September, we’re going to ride our very hardest for YOU!