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One Mom's Fight for a Cure

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Her daughter has an incurable disease called Friedreich's Ataxia ... but this mom won't give up fighting for her little girl.

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Guest Blogger Sandy Lane: When my husband and I got married, like many couples, I thought our future of having children would be part of our "normal life." Little did I know that 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 ½, she started tripping and falling. 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, we decided to look into it further. Our doctor recognized that she had some form of ataxia, but wasn't sure which type. After several tests, we found ourselves meeting with the cardiologist at CHOC. He shared with us the news that she had an enlarged heart, "cardiomyopathy," and paired with the ataxia, she probably had a disease called Friedreich's Ataxia. The tests confirmed that she did indeed have Friedreich's Ataxia, also known as FA. FA is a life-shortening, debilitating disease. We were told that most kids don't make it past their 20s and 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 Hospital . There were many times that because of her heart condition, she would have to spend weeks in ICU. I never imagined myself feeling so isolated and alone.

The truths 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, has problems with speech, swallowing, and weakness. My husband and I help her with bathing, feeding, and all 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 I to know that our little girl was at risk for this disease. 1 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. More than 10 years ago when we received the diagnosis at CHOC, we began searching for information and hope. At that time, there was little known about FA. We and other families came together and formed an organization called the Friedreich's Ataxia Research Alliance, also known as FARA.

FARA is a non-profit organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's Ataxia.

The promising news is that the researchers are making the necessary discoveries to bring us close to 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 increase funds for research all over the world. This year, I will be participating in Ride Ataxia III. The ride will travel 200 miles in four days. The mission of Ride Ataxia is to educate the public about Ataxia by drawing attention through acts of physical endurance. This was a very difficult decision for me to make. Chelsea opens her eyes every morning confronted with a new day of challenges and frustrations. If she can do it, I too can wake up to challenges by signing up for this bike ride. When I see what Chelsea has to endure each and every day, I can suffer through some sore muscles to help my little girl and others who have FA. This is a HUGE challenge for me. I will continually be reminding myself that my sore butt is nothing in comparison to what Chelsea has to go through each day.

To make a donation to Ride for Ataxia, visit Active Giving.


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20 comments so far | Post a comment now
C. February 28, 2009, 8:38 PM

I remember you and Chelsea from several years ago. I’m so sorry to hear that her disease has progressed so much. She will continue to be in my prayers.

Jill (the other one) February 28, 2009, 11:42 PM

I’ve never heard of FA and didn’t realize so many people carry the gene. Thank you for bringing attention to this cause and my thoughts and prayers are with your daughter.

Shelley Gonyer March 1, 2009, 3:13 PM

Hi Chelsea! I also have FA. I am 23yrs old and have been bound to a wheelchair for about 4-5yrs and was diagnosed with Congestive Heart Failure and Cardio Myopathy in 2007. I can relate to your physical and emotional pain, my heart is with you.

Allison Agresti March 1, 2009, 5:21 PM

I am one of your sister’s friends, and I have learned so much about this diesease through her, I wish you the best of luck on your ride, and with the fight of this disease, I will have your family in my prayers and I know God will help you through.
Blessings,
Allison

Eve Simon March 1, 2009, 8:04 PM

Hi Sandy & Chelsea: I am so sorry to
hear of the progression of Chelsea’s life. She is fortunate to have you as
her mother and your sisters to support her. You will all be in my prayers. I
know you’ll make the mileage. Love
Eve

Mom March 1, 2009, 8:26 PM

Chelsea is my hero!

Coco March 1, 2009, 9:19 PM

What a beautiful family! God bless all of you…..you have my support for your bike ride and my prayers.
XOX, Coco

Andy March 2, 2009, 12:21 AM

Aunt Patty says I had better help “or else”…. Let me know what I can do.

lawr4ebss March 2, 2009, 9:04 AM

She was said to be found by her fans on a celebrity and millionaire dating site named ” ——Richromances.com”.. Is it really her?

Jayce Bartok March 2, 2009, 12:04 PM

Go Sandy!

I have been lucky to get to know the FA community through the film I wrote The Cake Eaters which focuses on a teenager with FA dealing with love and life.

My heart and thoughts go out to you on your ride.

Best,

Jayce Bartok

Terri March 3, 2009, 12:55 AM

Please know Chelsea that my thoughts and prayers have never ceased since I was first told of your disease.

ELLEN March 26, 2009, 10:39 AM

HI CHESEA,

i have two adult children with fa. i know what a battle this is for you and your entire family. ny oldest (joanne)
is 42 (late onset.) however she is confined to a wheelchair,has loss of hearing, scoliosis and just yesterday her nuerologist notice her vision is badly inpaired. she is quite frightened. my son (joe) 36 also has fa. (late diagnoses.)
he has severe cardiomyopathy and had complete heart failure in 2006 he is survivng with a heart pump. we have been trying to get him on the list for a heart transplant because know one knows how long the heart pump will work.i can’t express how horrible this disease is. like your mom and dad, my childrens father and i had no clue that we were carriers of this gene, we didn’t know much about genetics back in the sixty’s!!!
i pray everyday for a miracle treatment,cure. and i am always amazed at the strength and wonderful attitudes that you all seem to have. you are very lucky to have wonderful caring and supportive family.
you will be in my prayers always and never give up hope your still very young and beautiful

ellen kotkowski

nati April 8, 2009, 12:35 AM

hey,
i am a 27 year mother who has fa and i am i just so glad that their is people like you who the energy and a great heart to help find a cure for fa. i read and try to make everyone aware of the disease as well and hope that one day there would be a medicine to cure it. dont loose your hope i know i wont.

fabiola April 9, 2009, 4:47 PM

Chesea is alway in our prayers every nigth my douthter has the same problem and bolieve me i dont know what to do. fabiola aguilar

fabiola April 9, 2009, 4:59 PM

this is a question for chesea mom’s when your doughter was sick of a cold what medecine do you give her..becuse two weeks ago my dougher had the cold and after that she coplains that she gets so tayer of her legs..did your dougter had the same problem. can you sent me an email to reyes.rosa@merix.com.. thanks. fab.

Dr.J.Ramesh Chandra Das April 22, 2009, 7:07 AM

I require encouragement and financial support to accelerate and encourage me for utilising my patience and mentality to devote my early hours in the morning to meditate under medicinal plants and trees in various places in India to enable me to give relief any one with any suffering whether he is nearby or faraway.

Dr.J.Ramesh Chandra Das April 24, 2009, 2:11 AM

Do you have any belief in the healing of any disease by healers graced with the power of healing acquired through uninterrupted meditation in the early hours everyday sitting under medicinal plants and trees at most famous such places in the various parts of India. If so contribute liberally for enabling me for the curing of any disease of yours as well as persons suffering from any incurable disease any where in the world.

Iwjeobov June 24, 2009, 9:48 AM

XW3lBn comment6 ,

Rachel September 11, 2009, 11:10 AM

Hi Sandy, My daughter(12) has FA. Her symptoms started about 2 1/2- 3 yrs old. Unlike you it took us 5 years to get a diagnosis. My daughter also has Cardiomyopathy but thankfully it is not interfearing with the function of her heart. We have decided not to have the scoliosis surgery and she has just been put on a Bi-pap mask at night to help with fatigue. I will keep you, Chelsea and your family in my prayers.

faxless payday loan December 15, 2009, 9:42 PM

Hi!!! www.momlogic.com is one of the best resourceful websites of its kind. I take advantage of reading it every day. www.momlogic.com rocks!


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