Lilah Lotus Lamont
Lilah is our 2 year old daughter suffering from Spinal Muscular Atrophy type 1. SMA is a neuro muscular disease that robs babies and children of physical strength by affecting the motor nerve cells in the spinal cord; this results in the loss of the ability to walk, eat, and eventually breathe. It is currently the #1 genetic cause of death for infants. Unfortunately, Lilah suffers from the most severe kind of SMA, type 1, which only warrants a life expectancy of 1-2 years.
Lilah had spent over 200 days living in hospital, 189 of those were spent in London in the Pediatric Critical Care Unit away from home. She has had 4 surgeries, over 120 blood draws/pokes, 7 lumbar punctures, and over 70 XRAY/MRI/Ultrasounds. Lilah has a tracheostomy and is permanently ventilated, requiring 24/7 medical care.
Most recently, Lilah has gained special access to the first treatment for SMA, called Sprinaza. Since Lilah has received this medication she can now move her arms, wiggle her legs, hold her head for small periods of time, regained facial expressions, roll over, and can even be off the ventilator for 15 minutes!!! Lilah also reached her second birthday, something that was not promised to us a year and a half ago. Read more about our struggles with access to this life saving treatment in the 'advocacy' tab.
Lilah has an older brother named Carter who she absolutely adores. Every morning she waves bye to him while he gets on the bus, and cries when it drives away. Lilah will then proceed to stare out the window all afternoon and await for Carter's return. Her big brother is the only one who can hold her hand longer than 30 seconds, and she has a special hand movement she does when she wants her brother.
Some of Lilah's favorite things to do is play music, and dance. At her young age she already has such a huge passion for music. Anytime she hears it she will begin to dance, or tap to the beat - surprisingly on time with the music! If you put a guitar next to her or a little drum set she will begin to play it. Her second birthday party was ballerina themed and we enjoyed a day full of dance and music. It suited her perfectly.
Lilah also loves to go in the bathtub as she can move freely in the water, and splash the water in the air. Any toy she grasps onto she tries to put it in her mouth, even if its too big. She is beginning to go in a standing frame to start weight bearing. She has a wheelchair as well, and LOVES to go for rides in her new van.