Discovering Narcolepsy With Cataplexy Through My Daughter

by Joanne
(Cortlandt Manor, NY)

I'll never forget that phone call on that warm August day of 2012... "Mom I'm falling asleep at my desk" and in meetings...I didn't make much of it and just chalked it up to sleepless nights or anxiety over starting a new position at work....

After a week not only was my daughter falling asleep at work she was having bad nightmares and hallucinations....This was not supposed to happen...

She just moved to the city to be able to walk to her job after a year of commuting from upper Westchester NY, she had just settled in to her "loving her new york living" and just after we her parents asked how she was adjusting...."I am loving my life dad" kept ringing over and over in my head...And now this....

After two neurologist visits and telling her she was suffering from acute anxiety, her symptoms got worse.... A week after that she was at her friends engagement party and called to tell us she lost feeling in her left side..... What on earth was going on?

That labor day after she collapsed at a weekend away in the Hamptons we immediately took her to the emergency room where we spent the day taking tests and were told to have her see a neurologist....

After two weeks of sleep study and further testing she was diagnosed with narcolepsy with cataplexy....two words I had never heard of. She had been healthy her whole life of 25 years....

After weeks of researching this neurological disorder and searching for the right doctor and right treatment for our daughter, I suffered from post traumatic stress... Not being able to accept this.... My biggest challenge still today is not being able to fix this for my beautiful daughter.....Not one day goes by that I am not consumed by this, knowing my daughter has to deal with this all day every day and night for the rest of her life... I used to dream about her future and her having children....And now i panic.....

This has been my story....Then i look at my daughter...Who was dealt this card in life....As she calls it...And always tells me..."Mom it could be worse i could be terminal....

Not only was i blessed the day she was born, but she has been blessed with a bright light that touches everyone she comes in contact with... And this disorder just made her shine brighter....She gets up everyday and lives her life and faces her challenges head on.... She's always been an achiever and this disorder that has come into her life has not stopped her from moving forward in her life.

I know in her private moments she faces the unknown of what her future holds. Our lives have forever been changed that day in August back in 2012 when my daughter told me she was falling asleep at her desk. We can only hope and pray that one day there will be a cure for our daughter and all those who suffer with narcolepsy and cataplexy, so they can be free of medications and can go on and live their lives. Today i find my strength in my beautiful daughter who continues to live her life like the shining star she has always been...