Hope for Lilah was started for our 3 year old daughter Lilah Lotus. Lilah suffers from a terrible motor neuron disease called Spinal Muscular Atrophy type 1 (SMA). Although everyday is a challenge for Lilah she doesn't let that stop her! Lilah enjoys playing with her older brother, cuddles, going in her wheelchair, playing with toys, music, baths, and many more fun things that get her moving.
There is currently no cure for SMA but a new treatment is now available called Spinraza. This treatment was approved by Health Canada in June 2017, but CADTH and the common drug review had a difference of opinion. In December 2017 CADTH and the common drug review decided to only approve and fund this miracle drug for a very small subset of type 1's. One of the recommendations made was that if the child required permanent ventilation they cannot recieve Spinraza. As Lilah does require permanent ventilation, she does not qualify. Thankfully the pharmaceutical company Biogen has agreed to continue to give Special Access to all type 1's while we try to fight this terrible decision, and get access for ALL children and adults with SMA. For more information on this please visit the ''Advocacy'' page on this site.
We have started Hope for Lilah in hopes to raise funds for medical supplies that aren't covered, home renovations needed for Lilah, and her specialised equiptment. We are also donating a portion of all proceeds to Cure SMA Canada for research. Although it is very exciting we now have the first ever treatment for SMA, we want a cure. Cure SMA Canada provides funds to researchers to try and do just that. for more information on Cure SMA Canada and what they do please visit www.curesma.ca. Thank you for your continued love and support!
Throughout Lilah's journey she has always loved being photographed. Here are some memories from the past year.