twitter facebook stumble upon rss

One Mom's Fight for a Cure

sign up for the momlogic newsletter Tweet This
Her daughter has an incurable disease called Friedreich's ataxia ... but this mom won't give up fighting for her little girl.
chelsea.jpg

Guest Blogger Sandy Lane: When my husband and I got married, I thought having children would be part of our "normal life" in the future. Little did I know, Steve and I each carried a genetic flaw dramatically increasing the odds of us having a child born with a rare, devastating, incurable disease.

Chelsea was born a normal, healthy baby. However, when she was 4 1/2, she started tripping and falling. At first, we didn't think this was anything out of the ordinary; after all, kids can be clumsy. After several months of watching her get scrapes and bruises, though, we decided to look into it further. Our doctor recognized that Chelsea had some form of ataxia, but wasn't sure which type. (Ataxia is a dysfunction of the nervous system affecting coordination.) After several tests, we found ourselves meeting with the cardiologist at the Children's Hospital of Orange County (CHOC). He shared with us the news that Chelsea had an enlarged heart -- "cardiomyopathy" -- and that because she had this paired with the ataxia, she probably had a disease called "Friedreich's ataxia" (FA). The tests confirmed that she did indeed have FA. FA is a life-shortening, debilitating disease. We were told that most kids don't make it past their 20s, and that Chelsea would soon be wheelchair-bound.

Over the course of time, because Chelsea's immune system was so weak, she was prone to every infection that came her way. After every cold or flu, she would end up dehydrated and we would find ourselves at CHOC. There were many times where, because of her heart condition, she would have to spend weeks in the ICU. I never imagined myself feeling so isolated and alone.

The predictions about Friedreich's ataxia have come true for us. Chelsea is now in a wheelchair. She's had several surgeries to correct her severely deformed spine and feet. She is also now blind, battling pre-diabetes and has problems with speech, swallowing and weakness. My husband and I help her with bathing, eating and all the other activities of daily living.

The scary part of all of this is that it can happen to any one of us -- one in 100 people are carriers of FA. Carriers do not have symptoms of the disease, so there was no way for Steve and me to know that our little girl was at risk. One in 50,000 Americans have FA. It is very isolating, frightening and lonely dealing with a rare and untreatable disease. FA has changed many things about our lives and brought many emotional, financial and social challenges.

My husband and I were determined to do everything possible for Chelsea and others with FA. When we received the diagnosis at CHOC more than 10 years ago, we began searching for information and hope. At that time, little was known about FA. We and other FA families came together and formed a national nonprofit organization called the Friedreich's Ataxia Research Alliance (FARA).FARA is dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's ataxia.

The promising news is that researchers are making the necessary discoveries to bring us closer to having treatments and finding a cure. But we are at a critical stage which requires millions of dollars to fund drug development and clinical trials.

I've done numerous fundraisers over the years for FARA to increase awareness and fund research all over the world. This year, I will be participating in the Seattle Triathlon as part of Team FARA on August 15.

For more information or to donate, please visit Team FARA.


next: 20 Sand Sculptures You'll Dig
191 comments so far | Post a comment now
praca February 26, 2011, 11:48 AM

Hi there, You’ve done an incredible job. I will certainly digg it and personally recommend to my friends. I am confident they’ll be benefited from this site.

kurs masaż February 26, 2011, 11:57 AM

It is appropriate time to make some plans for the future and it is time to be happy. I’ve read this post and if I could I want to suggest you few interesting things or advice. Maybe you can write next articles referring to this article. I want to read even more things about it!

buty February 26, 2011, 3:40 PM

My brother suggested I might like this web site. He was entirely right. This post truly made my day. You can not imagine simply how much time I had spent for this information! Thanks!

program tv February 27, 2011, 2:07 AM

hey there and thank you for your information – I’ve certainly picked up something new from right here. I did however expertise some technical points using this site, as I experienced to reload the site lots of times previous to I could get it to load properly. I had been wondering if your hosting is OK? Not that I am complaining, but sluggish loading instances times will sometimes affect your placement in google and could damage your high-quality score if ads and marketing with Adwords. Well I am adding this RSS to my e-mail and could look out for a lot more of your respective interesting content. Ensure that you update this again soon..

program tv February 27, 2011, 3:06 AM

I do not even know how I ended up here, but I thought this post was great. I do not know who you are but certainly you are going to a famous blogger if you aren’t already ;) Cheers!

program tv February 27, 2011, 5:59 AM

This is really interesting, You’re a very skilled blogger. I’ve joined your rss feed and look forward to seeking more of your great post. Also, I have shared your site in my social networks!

program tv February 27, 2011, 7:11 AM

Hi, i think that i saw you visited my web site thus i came to “return the favor”.I’m trying to find things to enhance my web site!I suppose its ok to use some of your ideas!!

Talia Beish February 27, 2011, 9:00 AM

I love this post a lot. I will certainly be back. Hope that I will be able to examine a lot more insightful posts then. Will likely be sharing your knowledge with all of my friends!

piłka nożna February 27, 2011, 10:44 AM

Unquestionably believe that which you said. Your favorite justification appeared to be on the net the simplest thing to be aware of. I say to you, I certainly get annoyed while people consider worries that they plainly do not know about. You managed to hit the nail upon the top and also defined out the whole thing without having side-effects , people can take a signal. Will likely be back to get more. Thanks

Potenzmittel kaufen February 27, 2011, 7:48 PM

I just could not leave your website before letting you know that I actually enjoyed the actual useful information you offer to your visitors…

buty February 28, 2011, 1:35 PM

Hi there, You have done an incredible job. I will certainly digg it and personally recommend to my friends. I am sure they’ll be benefited from this web site.

satellite tv February 28, 2011, 4:07 PM

As a Newbie, I’m constantly doing a search online for articles that can help me! Thanks a lot.

tongkat ali extract February 28, 2011, 7:17 PM

Thank you for your wonderful article! It has long been very helpful. I hope that you will carry on posting your wisdom with us.

ekstraklasa March 1, 2011, 1:18 AM

We’re a group of volunteers and opening a new scheme in our community. Your website offered us with valuable info to work on. You have done an impressive job and our whole community will be thankful to you.

StarCraft 2 Guide March 1, 2011, 6:05 AM

I’m having a small problem. I’m unable to subscribe to your rss feed for some reason. I’m using google reader by the way.

Alethia Addiego March 4, 2011, 5:07 AM

I am not so brainy to be efficient to write out brilliant stuff like you do but I am trying to pay it back so hoepfully this will pass you a broad grin or make you giggle or at the very least give you a thought for the day? : The only way to get rid of a temptation is to yield to it.

vigrx March 4, 2011, 11:15 PM

Let me start by saying nice post. Im not sure if it has been talked about, but when using Chrome I can never get the entire site to load without refreshing many times. Could just be my computer. Thanks.

Sherly Mcfetridge March 5, 2011, 10:00 AM

Thanks for your great article! It has been very useful. I wish that you will proceed sharing your knowledge with us.

Aquarium Fische March 5, 2011, 8:32 PM

I’ve considered many web firewood and I may for sure point out that this you are my favorite .

click here March 7, 2011, 12:23 AM

I Am Going To have to return again whenever my course load lets up - however I am taking your Feed so i could read your internet site offline. Cheers.


Back to top >>
advertisement