Perth Andover, NB resident, Annette Sebey suffers from Pompe disease, a very rare and often fatal neuromuscular disease. Because she lives in New Brunswick, she does not have access to the enzyme replacement therapy proven to slow and even halt the disease’s progression. Without treatment, most Pompe patients end up in a wheelchair and on a ventilator. Almost all Canadians with Pompe in other provinces are already benefitting from this Health Canada approved treatment. However, New Brunswick is the only province in Canada that has not developed any processes or protocols to deal with rare diseases.
Those who have signed this petition appeal to the Province of New Brunswick to ensure Annette Sebey has access to this proven treatment. Time is critical as the earlier Pompe patients receive the treatment, the better the outcome.
A 46-year old mother of two, Annette Sebey is a Canadian citizen who simply wants to be considered a part our universal healthcare system. Instead, she is left watching other Canadians benefit from the enzyme replacement therapy while her health continues to decline simply because of where she lives. Those who have signed this petition want to make sure that Annette Sebey does not fall through the cracks simply because her condition is rare, and she is the only resident of New Brunswick who has this need.
