After waiting and worrying for many months, we were told, on October 4th 2012, that our little girl is affected by FOXG1 syndrome, a very rare disease. FOXG1 is a genetic disease that has its share of challenges: severe motor delays, microcephaly, severe hypotonia, convulsions that take the form of muscle spasms (West syndrome), abnormal and stereotyped movements of the arms and hands, probable absence of speech, etc. The shock was very violent, and is hard to describe. We all want our children to be healthy. We have been through thousands of emotions, from misunderstanding to anger and sadness.
In addition to learning the sad news, we realized how much our life had just changed. The projects we had and our daily life would never be the same again. Our achievements, the dreams we had worked hard for: they were all put aside to take care of Léonie's needs. Our apartment was on the second floor, so we had to move. Lucky for us, we found a cozy little place to live. We had to come up with good ideas to raise money in order to afford this new home. After two years of hard work, we are now the owners of our condo, thanks to all the people who helped us. Now we have to adapt our home and the existing help programs don't provide enough money for us to do all the needed adaptations. We also need to change our vehicle for a new minivan so that the SAAQ can adapt it for us. The needs are gigantic, but not the budget. We have to live with only one income, because mommy must constantly accompany Léonie in her everyday life. Nowadays, our life is only focused solely on Léonie. They didn’t only tell us our daughter was sick, they also took away a part of our life and of our dreams.
Fear. Tears. Loneliness. Stubbornness. Hard work. Hope. Waiting, and then waiting some more. It feels as if we are constantly swimming against the current. Sometimes, for one little moment, our worries disappear when we dance with Léonie and she's laughing, when we sing songs to her, or when we go to the pool and realize she's slowly getting to know how her legs work.
It is unthinkable for us not to accompany our daughter through all the stages of her development and to all of her appointments. We are going to do everything that is needed to help and encourage her, but we also hope to spend some time with her to focus on enjoying life, as every other parent does! One second at a time, we are fighting for Léonie and hoping with all of our hearts to win the fight for her.
We also have to come up with solutions. We are now at a point where we welcome help. Aren't dreams meant to come true? If we don't believe in our child, who will?
Thank you for reading our story.