SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness. Individuals with SMA have difficulty performing the basic functions of life, like breathing and swallowing but SMA does not affect a person’s ability to think, learn, and build relationships with others.
We feel fortunate to live in Canada/BC with the supports of the healthcare system and the medical advances that exist in 2018. As of mid August 2018, we've made 4 trips to Vancouver to visit the neurology team at BC Children's Hospital who have been integral in Magnus’ care plan.
Supports for Magnus include a BiPAP machine to support his breathing and he has undergone G-tube surgery to support his future feeding needs.
At BC Children's, Magnus has so far had 3 loading doses of the drug Spinraza , via lumbar puncture, which we are receiving from drug company Biogen on compassionate grounds. This ground breaking drug is the first-ever approved treatment that targets the underlying genetics of SMA and may provide Magnus with potential benefits, slowing the progression of the disease. Drug trials did not include symptomatic babies of his young age and hence the potential effects are unknown.
We have been incredibly supported by our immediate friends and family, from meals to gifts and donations. Our intention is to use GoFundMe to:
-share Magnus with our broader community
-allow our little family to stay at home as much/long as possible
-provide an opportunity for giving for those who ask “how can I support you?”
-and to use it as a platform to provide updates on our journey with Magnus
We are adjusting to our new life with our baby boy who has special needs and who will be in our care for an indeterminate amount of time - we are savouring every precious moment with Magnus.
We're currently not very active on social media - if you want to reach us:
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- Donna Wait
- Allana McConachy
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