Maëlle, a rare little girl
I’m the mother of an 8-year-old girl, Maëlle, who is autistic and has been suffering from an autoimmune neuromuscular disease, myasthenia gravis, for just one year. The incidence at this age is said to be one in a million. No one can explain why Maëlle developed myasthenia gravis at such a young age. Less than fifteen years ago, Maëlle might have died of the disease. Thanks to advances in medicine, she receives plasma exchange (plasmapheresis) twice a week at Montreal’s Hôpital Sainte-Justine, in hemato-oncology, in addition to taking immunosuppressants, anticholinesterase drugs, Prednisone and intravenous immunoglobulins, as all these treatments led to hypogammablobulinemia (weakness of the immune system), making our daughter extremely vulnerable to any infection. She has been stable for three months, having survived sepsis in September 2010, and an infection of her permanent catheter in October 2010. No one can clearly say what tomorrow will bring. We’re banking on the medical advances that continue to come our way. In the meantime, we want to continue to live alongside Maëlle, her brother and sister, as normally as possible.
Catherine Kozminski and Olivier Adenot, parents of Maëlle, Maude and Mathieu