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  • 4 Years Old

  • Aicardi Syndrome

It is the little things that make life so sweet! This sweet little one is Lainey.  She is full of big love and a strong will.  Lainey recently endured spinal surgery so she can lift her head and to create enough room for her lungs to breathe.  Sweet Lainey was born on May 16, 2013.  Before birth her parents were told that she had a slight curve in her spine and one day would require surgery, but that was the only imperfection the perinatal specialists found.

Lainey was born via cesarean several weeks early and everything seemed to be great.  What blissful joy her parents felt as they held her in their arms.  They had an amazing first night of precious baby cuddles.

The next morning doctors rushed her to the NICU for difficulty breathing and to examine her eyes.  When she was born, they thought that her left eye was just swollen, but it actually had never fully developed.   Doctors tested her for genetic disorders and they were all clear.  Her parents were advised to see an eye doctor and a neurologist at her first birthday.

At 3 1/2 months old they noticed the onset of jerking movements.  They continued to get worse each day and they took her to the hospital.  After an MRI, the doctors revealed Lainey had Aicardi Syndrome.  

This sweet little one is Lainey.  She is full of big love and a strong will.”

Aicardi Syndrome is a very rare syndrome that primarily affects girls and is characterized by an absent or partial corpus collosum.  As the corpus collosum is responsible for connecting the signals between the left and right brain, it is accompanied by developmental delays, visual deficits, spinal anomalies and respiratory complications.

Lainey continued to have seizures which were treated with medication.  Although this does not eliminate them, medications can help minimize them. She also began therapy, seeing specialists and taking cannabis oil to reduce her pain and seizures.  She began to thrive and everyone was thrilled with the positive outcomes.  

Treatment was successful until a severe infection at the age of two exacerbated her seizures.  This affected her ability to function, she lost all of her mobility and she began to aspirate on foods and liquids.  As a result, she was provided with tube feedings to give her body strength again.  However, multiple infections followed and she ended up in the PICU clinging to life on an oscillator.  After 19 days, she pulled through and got to go home for Christmas.  This was miraculous and brought great joy to the family.  Lainey is very susceptible to germs and must stay away from large crowds to avoid significant illness.

The journey ahead promises uncertainty, but one thing is certain: treasuring every moment cuddling this sweet girl and seeing her gorgeous smile is all that matters.

Sweet Life Photography by Kim