An update on Emily…a long time coming

    • February 23, 2015 at 10:38 pm

      Over the last, I don’t know how long…but a long time…I have tried to log into the forum & could never get through. Eventually I just gave up trying but every once in awhile I come back & try again. Today must be my lucky day because it worked!

      Anyway…I wanted to update you all on Emily as many of you have been there with us along this journey.

      May 28,2015 will be Emily’s 2 year anniversary of being off of IVIG (and that means NO treatments at all!). She is doing really well. She’s an all A student & in 8th grade now. She is testing on Wednesday to get into the International Academy for high school. It’s the number 1 IA school in the country & number 3 in the world. She is treasurer of her chapter of National Junior Honor Society & a member of a Destination Imagination team. She competes in roller skating competitions & places in the top 3 at most competitions. She still plays the violin & is first chair in her orchestra. She is smart & sassy – just like any 13 year old girl should be. She wants to be a Forest Pathologist when she grows up because she loves trees & wants to help save the planet from deforestation & pollution.

      My wish is this update will give new parents hope. Emily was dx’d with CIDP at 4 years old. She was a pretty severe case – she relapsed often & received more IVIG than anyone on record. Then…she just started getting better slowly. We weaned her off of the IVIG in small increments & then took the plunge & stopped them. It is so wonderful to see her enjoy being a “normal” kid. I still freak out a little on the inside at any ache & pain she has. I don’t think that will ever go away & I can live with it.

      So hi all! I hope you all are doing well. I think of you often & very much appreciate all of the love & support I received over the years.

    • February 24, 2015 at 12:09 am

      Dear Kelly, (and Emily)
      This is fantastic news. It gives us all some extra hope, (I am in my 6th year now)
      Please keep posting and keep us informed. Posts like this bring an apple to your day.

      • GH
        February 24, 2015 at 7:45 pm

        This is wonderful news. Thank you for reporting.

    • March 18, 2015 at 2:48 pm

      This is wonderful news. To think that one of us has escaped the bonds of CIDP!

    • May 1, 2015 at 11:53 pm

      Kelly and Emily,
      Thanks for sharing your wonderful success. I’m sure, Kelly, that lifting the burden the syndrome brings to the whole family is something that you only dreamed of, and now your dream is real. Emily, as someone who also has been able to go off treatment, isn’t it great to be free of all of the daily hassle—you know, like a cloud of gnats flying around—the syndrome brings? Which of course pales in comparison to being free of infusions, and blood tests, and wondering how you were going to get your homework (in my case, my job) done (and not even caring sometimes, which is scarier still). Which pales in comparison to just knowing that, at least for now, you can be the best you can be at anything you want, rather than held back by some dumb syndrome.

      One simple request. Would you please cross-post your message into the Success Stories Forum.


    • May 28, 2015 at 8:39 am

      Fantastic Kelly. Your pride in Emily is justified; she is a gifted young lady.

      I’m so glad to learn Emily is treatment and symptom free. My neurologist’s goal for me was that I would get to the point that CIDP would not be the focus of my day. I can say I’ve arrived at that goal and I rarely visit the forum anymore (CIDP is just not on my mind very often if at all). Thinking back at the tremendous weight we’ve carried over the last 6 years since contracting CIDP reminds me What a burden those of us affected by CIDP carry (patients and caregivers). So I’m so glad that you’re free of the CIDP burden and not focused on CIDP on a daily basis either.

      Your vigilance and hypersensitivity towards Emily’s health is wise because of the road you’ve travelled.

      May God continue to richly bless Emily and you. Sending joyful cyber hugs towards you and Emily …