Our Daughter’s LEMS Treatment Allows Us to Enjoy Summer Again

Summer is a few weeks away, and for those of us here in northeastern Florida, school is out and the temperature is rising. For the first time in years, I’m excited about the prospect of summer. I anticipate lazy days by the pool and long days at the beach, along with summer camps and vacation Bible school. Family time will be treasured and abundant.

Lately, we’ve had too many summers stolen from us. The first was when our daughter Grace started exhibiting symptoms of Lambert-Eaton myasthenic syndrome (LEMS). The following summer was stolen by the COVID-19 pandemic. But this is the year I will put an end to giving up our summers without a fight.

The lazy days of summer are numbered, of this I am certain. Experience has proven just how quickly life can change. I embrace and welcome these days while our girls are still at home. Our son, the eldest sibling, has already graduated college, gotten married, and moved across the country. It’s a reminder for us not to take for granted the time we have left with our other children still at home.

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Change can happen in various ways, whether it’s kids growing up and moving out or the onset of a rare disease. We in the LEMS community understand the change that comes with a rare disease diagnosis.

For our family, the onset of a rare disease in our daughter’s life altered everything. Grace started showing signs of what we now know as LEMS in March 2019. By June, she was unable to walk and was using a wheelchair. She was diagnosed in July.

That first summer passed in a blur of doctor appointments, genetic testing, painful electromyography tests, and a whole lot of waiting. I remember wheeling Grace into the children’s hospital before she was diagnosed. The nurse was polite and tried to strike up conversation by asking what our summer plans were. I wanted to scream: “This! This is what we are doing with our summer! We are trying to figure out what is happening to our daughter’s health and save her from progressing further!”

I don’t remember how I actually answered, but I do remember feeling the loss of what our summer normally would have looked like. I never thought we would come as far as we have. The fact that I can even entertain thoughts of a summer full of swimming, dripping ice cream cones, and other fun is amazing to me.

The ability we have to enjoy our summer and incorporate all of the activities it entails is due to finding the right LEMS treatment for Grace. It has taken us three years to get here, but we finally feel like we are able to manage her symptoms and minimize her limitations because of the treatments and medications available to her.

We recently returned from a family wedding, where Grace danced the night away. Honestly, this is something I wasn’t sure she would ever be able to do again. She was so happy. No one cared that she couldn’t jump during the line dance or move as fast as everyone else. She was dancing!

We do not take for granted these monumental experiences after a LEMS diagnosis. We treasure them.

So I balance summer activities with allowing time for Grace to rest. Today, we manage her illness rather than having it manage us.

For those still stuck in the murky days of diagnosis, hold on tightly to the hope of things yet to come. Hope for better days and restored activity. Hope for an abundant life and a summer of fun.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.