For the past four years since our Rett Syndrome diagnosis I considered us one of the “lucky ones.” I watched as many of the other girls struggled day in and day out with seizures – listened to their mommies (my dearest friends) cry and yell out of frustration. I could listen and encourage them but I could not relate. Unfortunately, now……I can relate all too well :(
Those of you who follow our lives know that over the past couple of months we have thought Brooklyn might be having seizures and unfortunately tonic seizures were confirmed via her 72 hour video eeg last month.
I made the agonizing decision to start her on seizure meds this week. Our drug of choice? Keppra.
I thought the feeding tube decision was a horrible one….that does not even come close to this choice. Not even close. I hesitated to start meds because I feared a personality change (a zombie-like little girl), Brooklyn is a lively, social, fun-loving little girl and I was afraid I would see that vanish overnight. Instead what I saw is her little body struggling with these seizures – exhausting her…..seems like if we did not start meds we would not keep our vibrant personality either – she was too tired after each seizure. SO we started them and now we wait…..
The picture above was taken following a seizure last night. It was a big one. a bad one. We had to put the oxygen on her to help her “come out of it.” I hesitated to post this picture actually. Because it looks sad, she seems helpless.
This is what Rett Syndrome does.
This is why I fight EVERYDAY to raise awareness and funds for Rett Syndrome research. The past 29 days have been focused on awareness as we participated in Rett Syndrome Awareness month but for Brooklyn Rett Syndrome does not end on the 31st. She will continue to fight this battle every day of every month of every year until our cure is found.
That cure is coming! It has been proven reversible in the lab and scientists say it is not a matter of IF it can be cured but WHEN. Research takes funding. LOTS of funding. Knowing that money stands in the way of getting my little girl back is heartbreaking. So I continue on….hosting fundraisers, linking to Brooklyn’s GP2C web page – ANYTHING it takes to continue to move our research forward. ANYTHING it takes to cure my little girl.
I want to thank ALL OF YOU who continue to support us in our fight against Rett Syndrome both financially and emotionally. It is a tough road – I could not do it without all of you!
Before Rett Syndrome Awareness month officially comes to and end, you KNOW I have to post the link one more time: Brooklyn’s Page is here for any of you who want to make a donation in her honor.
I know that one day we will be choosing between prom dresses instead of seizure meds……how I long for that day….until then, we fight! I hope you continue to fight with me!

6 Responses

  1. April Frazier October 29, 2011 at 1:15 pm | | Reply

    Kelly, how heartbreaking. I feel your pain. I long for the day when our girls are whole. When there's no more suffering…no more pain. Until then, we will join together and be strong for them. We will do everything humanly possible for them and call on God's supernatural power to end this terrible disease.

  2. Gramma Myrna October 29, 2011 at 2:52 pm | | Reply

    Kelly, I can't help but cry as I read your post because all I can think each time I read post of how bad people have it is, "We're SO lucky so far!" So far Nora has only had 1 big seizure and none since. But last night their whole family spent the night with us since Justin and Kristy went out on a date and weren't going to return home until late. Nora is on her new medicine for sleep and tension. After 2+ weeks we haven't seen anything but sleepless nights. So Nora woke up at 1:30 and starts bouncing and shrieking her happy shrieks. Kristy took the first shift then seeing no sleep in site let her bounce and shriek and went to feed Nico. I got up and rocked her until 5 when she fell asleep. I laid her down then got in bed and she started up again! So I went and laid with her and got her back to sleep and just slept with her until 7:45. She's still asleep but I can't help but think of Kristy and these sleepless nights with a new baby and 2 1/2 year old to take care of too. What a hard life! Rett Syndrome will NOT go away Oct. 31 but we all sure wish it would! I can only be thankful for each day that we have and hope Kristy and Justin can stay strong. Thinking of you always! Myrna J.

  3. Anne October 29, 2011 at 5:08 pm | | Reply

    Kelly – I'm so sorry. I think of you and your precious children all the time. I will never forget your kindness in reaching out to me when we thought Grace had Rett Syndrome. My heart breaks for you and her right now. I'm praying that God gives you the strength and peace you need right now for this phase of the battle against Rett's. I also continually pray for a cure and that Brooklyn can benefit from it.


  4. Susan Dockter October 29, 2011 at 5:46 pm | | Reply

    Dear Kelly and Family,
    Yes I am crying, too. Hearing a new Mom (yes I still consider you new, even though you are knowledgeable and wise beyond words) having to face YET another RTT obstacle is heartbreaking, and takes me back to Sara at 3, 5, 6. Not that I don't still mourn what RTT has done to this innocent soul…. but it does get better, despite the obstacles never ending it seems. When Sara has a "hard" seizure (what we call the tonic clonic to her), I stay with her of course, soothe her. But I also tell her how much I HATE those seizures, hate, hate, hate, and that it will be over soon, and Mommy will be right hear holding her. (Okay, now sobbing.)I don't know if it helps Sara, but it sure helps Mommy. Larry's youngest sister used to have epilepsy (tonic clonic seizures) when she was young, and she told– they do not hurt and other than her aura of a metallic taste in her mouth, she never even was aware until it was over. Knowing Sara does not have pain helped me some, since preventing anymore or treating pain beyond what Sara already experiences on a daily basis is so important to me. All of Rettdom is hugging you right now Kelly and you will make it through this, too! Love, Susan Dockter

  5. Mariah Meads October 30, 2011 at 8:58 pm | | Reply

    she is almost as beautiful as her mother!! stay strong Kelly. sending you guys my love from Issaquah. XX. (:

  6. Karen Gordon November 11, 2011 at 10:28 pm | | Reply

    Hi Kelly! I'm a new follower.
    Thank you fr sharing your story.

    We started investigating what our son has. He can't walk well. Our first appt with a neuro was last week. He has developmental delays, ataxia..etc..
    I'm still digesting all that..

    But I have been fiding blogs and groups that really help us not feel alone.

    I would like to praise you for being such a strong woman.

    Hang in there, I will be praying for her.

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