SMA is a rare genetic neuromuscular disorder that causes muscle weakness and atrophy. Babies muscles slowly deteriorate, causing low motor ability, troubles feeding and eventually, breathing. At just 5 weeks old, Lucy was diagnosed with Type 1, which is the most aggressive form of SMA. After learning of her diagnosis and being educated by their doctors, Lucy's family knew that the most effective option was for Lucy to receive the life saving medication Zolgezma. But, because it isn't yet approved in Canada, this drug costs 2.8 MILLION dollars. This weeks guest, Laura (Lucy's beautiful mama!) is sharing their story to raise awareness and advocate for SMA families.
There are other families here in Canada who are on the daunting journey of raising almost 3 million dollars so that their babies (who must get the treatment before their 2nd birthday) can also receive Zolgezma.
If you feel compelled, PLEASE visit the websites below to donate to babies who are fighting the timeline of this disease.
Harper Hanki - @myhero.haper
https://ca.gofundme.com/f/my-hero-harper
Etransfers: [email protected]
Nathan Ouellet - Nathan_sma1
https://www.gofundme.com/f/realiser-l039impossible-avec-nathan?utm_source=customer&utm_campaign=p_cp+share-sheet&utm_medium=copy_link-tip
Reign Josiah - Reignjosiah
https://www.gofundme.com/f/treatment-for-type-1-smamy-5-month-old-son-reign?sharetype=teams&member=2690754&rcid=r01-156746572274-f69d2dd2c3324d4e&pc=ot_co_campmgmt_m
Chloe Madison Sousa - Cutelikechloe
https://www.gofundme.com/f/cute-like-chloe?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cp+share-sheet
Kaysen Martin- Kaysensquest
https://ca.gofundme.com/f/kaysens-quest
Wyatt Vasey - Bravewyattsma
https://www.gofundme.com/f/brave-wyatt-sma?utm_source=customer&utm_campaign=p_cp+share-sheet&utm_medium=copy_link_more
Eva Batista - Forevastrong.sma
https://www.gofundme.com/f/foreva-strong
A BIG thank you to Parker and Posie for being this weeks sponsor! Jaimie has makes baby shoes using upcycled bamboo and suede. These are my FAVOURITE shoes for babies and toddlers. The elastic ankle makes it super easy to slide three on, but also KEEPS them on little, active feet! The neutral colour palette and lace add ons help to make these SO adorable, too!
To see for yourself, visit @parkerandposie on Instagram or go to www.parkerandposie.com