Brave Little Bree

Bree was just diagnosed with a rare genetic disorder called SMC1A Cornelia de Lange syndrome. The timing could not be more perfect... there is a research study and conference being done just for this specific diagnosis at a clinic in Baltimore, MD on April 7, and Bree is one of 12 girls who has been invited to participate. Her geneticist says this is an opportunity of a lifetime, to be in a room with those other little girls and their families just like her, just like us. Everyone with SMC1A CdLS has intractable/refractory epilepsy (seizures that are not controlled even with several pharmaceutical drugs), so they’re hoping to find answers and relief for these special girls! It’s pretty last minute and she has never been on an airplane so that will be interesting with all her medical supplies, but we feel it will be amazing experience and help not only our sweet Bree but other families who are faced with this diagnosis. We need help with travel expenses in order to make this happen. *if we do not end up able to attend for any reason (like if Bree were to get sick), any money donated will go towards her CBD oil.