Our daughter, Elisa was diagnosed with Lafora Disease at the age of 14.  She has had it for nine years now. She went from a vibrant, athletic, straight A student to a wheelchair-bound young adult. She can no longer walk, eat by herself, go to the bathroom, or have complete thoughts. She suffers from constant myclonic seizures and gran-mal seizures. From where she was, to where she is now, her life is just so sad.

She watches television or movies all day, usually the same ones over and over because she can’t remember what she is watching. She gets sad and cries because at the age of twenty-three, she is aware she should be enjoying life, going out with friends and working. She has never had the opportunity to go on a first date or get that first kiss, and she will never get married or have children.

Lafora Disease, also called Lafora progressive myclonus epilepsy, is a rare, progressive and very degenerative form of epilepsy which ultimately is terminal. Once symptoms become present, life expectancy for Lafora Disease is 10 years, and Elisa is currently in her ninth year.

Our hope is that a cure will be found in her lifetime, but due to the time frame of her disease, our reality is that there will not be.  By telling our story, we hope for further awareness of this terrible disease, and that more money will be donated to find a cure. Elisa’s story of hope can also be found at Chelseashope.org.

Thank you.

Elisa’s mom and dad – Tom and Mari

 

2 thoughts on “Lafora Disease is terminal and Elisa is hoping for a cure”

  1. Anonymous says:

    Such a heartbraking story, it just made me cry.

    When I was like 18 months old, I had regressed into autism and before that, I was a normal baby and toddler just like Elisa.

    While I regressed into autism, my mom was really worried about me and she was desperate to know what was happening with me and the way I looked while I regressed, it was quite possible that some doctor would of ordered my parents to test me for something like Tay-Sachs. It would be really hard and scary to imagine my mom in that scenario.

    But thankfully, after testing by not 1 BUT 5 genetic specialists, there was NEGATIVE results for any real genetic abnormality. Lead and mercury levels were tested normal.

    In the midst of my parent’s fears and agitation, not only my had regression actually stopped after a certian point (that point was certianly not vegetative state nor death,) but afterwards I recovered to the point of Aspergers and I still get to enjoy many of the things most of us take for granted.

    I’m still in some state of disbelief that something like this exists….not in the elderly…..but in teenagers, the happiest, healthiest point of life and when you are planning the great dreams ahead. Lafora is a savage lampery monster that strikes in that point of life and gives it’s victims and the people absolutley no mercy whatsoever. Not even a leech nor even Alzheimers in my grandmothers does what Lafora does.

  2. Carlos Caycho says:

    Your history make me cry because my daughter Yasmin and Anthony has same disease Lafora
    I cry every day for my kids
    I am a desperate father with 2 teenager with lafora myoclonic epilepsy progressive
    My son Anthony is an autistic boy 16 years old he has 4 years with seizures and My daughter Yasmin 15 years old she has 4 years continues seizures.
    medicines doesn’t work my kids try all medicines.
    I read a lot about lafora and I know is progressive , now my 2 kids need wheelchair and we have to feed, bath and do everything..
    I remember an cry a lot watching their old pics when their were avaialalbe to do everything run, play, eat and bother me all time is very sad now how are my 2 babies.
    for me always they will be my babies.

    I prade god everyday give a better life to my kids
    and one day they will be healthy and no more seizures.
    is very hard to see my kids how deterioring their life every day.
    People with person with this disease understand how hard is this situation
    and nobody know in this world imagine how hard is deal with this situation with 2 kids. and crying everyday next to them,
    telling GOD please stop
    This is my cell 305 907 4381 I live in Miami florida this is my email
    caycho@bellsouth.net carlos.caycho@crowley.com and I can explain anybody how is my situation and help someone if need any advice.
    only you need to be with your five sense alert,
    I had install camera in my house everywhere to check my kids.
    Anything I can do from my part I will for my 2 kids
    nobody knows how sad is my kids life and I cry every day
    sometimes I wish die with then for get a better life next to God
    is hard to describe.
    Thanks for read my email

    God bless you everybody

    Yasmin & Anthony and His dad Carlos

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