Logan's Journey with TUBa1a

Logan McKenzie was born on February 8, 2024 to Shane and Ashley McKenzie. Ashley was 35 weeks pregnant and Logan was born via C-section due to intrauterine growth restriction and heart decelerations.

As soon as Logan was born, he was unable to breathe on his own. He was intubated in the operating room and rushed up to the NICU at Suburban hospital.

Suburban did everything they could to help Logan breathe, but on his second day of life he was taken by ambulance to Oishei Children’s Hospital NICU.

At Children’s they ran a bunch of tests and found that Logan has small low-set ears, a webbed neck, a paralyzed right diaphragm, a larger left ventricle of his brain, a thinner corpus callosum in the brain and a blood clot in his brain.

Because Logan had all of these findings, Children’s decided to run some genetic testing. When the results came back it was found that Logan has an extremely rare genetic condition called a Tubulinopathy. His variant is known as TUBa1a. Your chances of getting this condition are 1 in a million and there are 200 known, recorded cases.

Tubulin proteins play a role in brain development. Mutations in the tubulin genes affect patients with brain malformations. The clinical features of the Tubulinopathies include motor delay, intellectual disabilities, epilepsy, global delays and other deficits. We won’t know exactly how Logan’s brain malformations will affect him until he continues to grow and develop.

Logan had a diaphragmatic plication surgery done to help stitch down his paralyzed diaphragm and gave his lung room to expand. Children's did everything they could to try and get Logan to breathe on his own but he still required a ventilator to help him breathe.

Because he still needs a ventilator to breathe the decision was made to operate and place a tracheostomy and a g-tube for feeding.

The McKenzie's will be required to make necessary changes to their home, acquire special equipment and create a safe place for Logan to come home to. Any monies donated will go towards all the required changes that need to be made and to cover the cost of medical supplies and therapies not covered by insurance.