Stella Quinn Lackey was born on May 18th, 2019. After just three weeks, her pediatrician noticed she was showing signs of low muscle tone (minimal reflexes and no head control).  At his recommendation, we immediately went to Phoenix Children's Hospital for a battery of tests.  Stella officially received a diagnosis of Spinal Muscular Atrophy (SMA) Type 1 on June 18th. 

Spinal Muscular Atrophy is a rare genetic disorder (that effects about 1 in every 10,000 live births) that gradually takes away a person's physical strength (including walking, eating, and eventually breathing). Although there is no cure for SMA, incredible strides have been made in recent years.  There are currently two treatments available to those suffering from SMA (Spinraza and Zolgensma). 

On July 3rd, Stella was lucky enough to receive Zolgensma gene therapy, which intravenously delivered her missing SMN1 gene. The SMN1 gene will hopefully gradually help Stella's body create and maintain the motor neurons that assist in building and maintaining muscle.  At the time of treatment, Stella was the very first baby in Arizona to receive this treatment. 


Since treatment Stella has shown gradual (but incredible) improvements ranging from increased movement in her limbs, to less labored breathing patterns, and even early signs of developing head control!

Stella's future remains very much unknown, and we're taking this battle one day at a time.  Any donations received will go toward current and future medical expenses, as well as preparing for Stella's life with SMA. 


To follow along with Stella's journey please head to https://www.instagram.com/stronglikestella/ -- Stella's fighting spirit and infectious smile gives us so much strength and hope as her parents

From the bottom of our hearts, thank you for all of the continued support. 


#STRONGLIKESTELLA

With love,
Samantha and Jeremy Lackey