In December 2019 at just 11 weeks old, Luella Oudshoorn was diagnosed with Infantile Spasms or West Syndrome, a rare and disabling seizure disorder in infants, usually with an onset around six months of age. Its estimated approx. 2500-3000 children are diagnosed globally each year. At Luella’s worst she was having 250+ spasms a day. Devastatingly, her spasms are deemed ‘drug resistant’, having failed close to fifteen anti-epileptic drugs (AED’s), and therefore she was unable to obtain seizure control.

 

Upon introducing Cannabidiol Oil in unison with steroid treatment and one AED, Luella’s spasms have been reduced to thirty a day. Although 30 is still too many, Luella has taken it upon herself to rewrite her own play book and make mammoth improvements that doctors said would be near impossible.

 

Erin and Dave have formed a NFP called “Lulu Love Project”, which gives a deeper insight into West Syndrome and Luella’s journey. The family want to give something back for research and clinical support in the world of Medicinal Cannabis treatments which is a big part of their own journey. They also want to ensure that parents who ever find themselves in the same situation know where to turn to for support, guidance, and education.

 

(In 2021 Erin and Dave ran City2Surf to fundraise for Epilepsy Action, raising over $64,000 in just 2 weeks! This enabled the development of the CanGuide website.)