Friday, May 4, 2007

Caden's Hero - A Tribute Marking the Two Year Anniversary of His Diagnosis

Two years ago (May 10, 2005), I was delivered one of the most devastating realities that would shake any parent. I found out I was a carrier of Fragile X Syndrome and had passed on the full mutation to my son Caden Bray. Fragile X is the most common inherited cause of mental impairment. It is also the most common known cause of autism.

Now, two years later, it could be any morning...5 a.m...and I can’t fight back the tears. It’s not brought on by my newborn twins, Camden and Braylin, crying or aching for attention, they’re sleeping soundly - they are my miracle babies created in their brother's honor, the namesakes of their big brother Caden Bray.

He is now three and a half but has the mentality and cognitive ability of a two year old, even though he's 35 pounds and 38 inches tall, as strong as an ox and as cute as a button. It’s not exactly the way I like to start my day especially with little ones who still wake during the night. In the quiet of the morning, when others are sound asleep, I awake in tears of worry and frustration.

You may wonder what I have to cry about with the miracle of the twins being born healthy and our family finally complete. Simply put, I need a hero. I need someone to help me, help my family, help my son, with Fragile X.

Why the tears? Why now? Why two years after his diagnosis. Because I will fight until my last breath for him - it’s a combination of things. Caden’s third birthday was in September. His siblings were just born and we have all their milestones to look forward to - each milestone will be a powerful reminder of what Caden didn’t do compared to what typical children his age did or are now doing at his age.

At three, he should be talking in sentences, learning to ride a trike, and singing his ABC's.

At three, he should have friends, be interacting with his peers at daycare instead of isolating himself or pushing or biting them.

At three, he should be walking up and down stairs but his lack of muscle tone causes him to still use the banister.

At three, he should use a fork and a spoon but his hands are still his utensil of choice.

At three, he should be potty training but can only utter the word ‘potty’ with no idea of its purpose.

At three, he should be able to hug his parents and tell them "I Love You."

Instead, at just three, he’s held hostage by Fragile X.

I always wanted to be a mother - but this is not the life of motherhood that I signed up for. This is where the tears come in. We’ve had our ups and downs. We’ve been at the end of our rope. We’ve had a long stretch of not doing too bad. We pray he’s not one of the many Fragile X kids that develop seizures at the common age of five. We wonder how we will handle this if we are unlucky enough to encounter this in the future. Although I’m not one to feel sorry for myself, there have been times when I’ve felt like a battered woman wondering how many more of life’s fastballs I’m going to be able to hit out of the park. Sadly, I’ve got a few minor scars at the plate, yet the biggest scar won’t ever be seen with the naked eye, because it’s on my heart, which has been broken far too many times when I’ve been unable to help my son or think of how the future might treat him.

I want to be his hero but who will be my hero. The hero I’m looking for won’t be made of steel or have extraordinary powers. My hero is going to be that person or team that can improve the interventions that will help my son and others like him.
They’re going to be the men and women who have dedicated their life to science, attempting to unlock the mysteries of the human brain and the mystery behind Fragile X.

I don’t know what drives the Fragile X researchers or what’s behind their passion but I pray it never weakens. They’ve made remarkable breakthroughs since discovering the gene that causes Fragile X. They’ve made a medical breakthrough with the effects of a link between genetic mutations found in individuals with Fragile X and dysfunction in the metabotropic glutamate (mGluR) neurotransmitter system (the brain chemistry that allows cells to “talk to” each other).

Recently, noteworthy scientific breakthroughs included:

In a February issue of the journal, Public Library of Science Biology, the University of Wisconsin-Madison researchers reported that, in mice, the Fragile X mental retardation protein may regulate the material responsible for the plaques and cell death seen in the brains of Alzheimer's patients.

In March, the federal Food and Drug Association (FDA) granted an Orphan Drug Designation for an experimental new drug based on the metabotropic glutamate (mGluR) theory, that has the potential to reduce intellectual deficits and relieve the symptoms of Fragile X and will now go to human clinical trials.

I thought this was amazing and that Fragile X would finally make the New York Times. I thought there would be international news releases littered with information on Fragile X especially with all the autism press we've seen lately. Instead, the media focuses on Britney Spears shaving her head and the dysfunctional life and death of Anna Nicole Smith. It saddens me to think that one of the world’s leading causes of mental retardation, and a known genetic cause of autism, has relatively no public awareness, while other conditions are known in almost every household.

There is a strong possibility that this breakthrough will not only help those with Fragile X, but those with Alzheimer’s disease and autism as well. It would be a domino effect into a cure for other syndromes.

Fragile X researchers get little recognition, in the big scheme of things, and little funding. So why do they do it? They need to know that one mom (well many Fragile X moms) is counting on them. They are my heroes. They are the individuals who give me HOPE and keep my faith alive knowing that one day their research efforts will put an end to my heartbreak and provide a normal future for my son. Then, and only then, when I wake up at 5 a.m. I can worry about whether the coffee pot was set the night before or whether to hit the snooze button one more time.

In all honesty, I was never a big charity-giver before learning of Caden’s condition – out of sight, out of mind. I have since learned the importance of charity and have become the regional director for FRAXA, the Fragile X Research Foundation. I know we all have special charities or issues that are close to our hearts. I’ve given money to the Lance Armstrong Foundation as my mom and aunt both died of cancer. I’ve given to the Retts Syndrome Foundation because I work with someone whose little girl is affected. So if you want to be a part of a great charitable challenge for someone you know…be one of Caden’s heroes.

Doris Buffett, president and founder of the Sunshine Lady Foundation, has donated $500,000 to FRAXA, The Fragile X Research Foundation. Ms. Buffett has also promised to donate an additional $500,000, if FRAXA can raise $500,000 in new money by October 31, 2007. If you would like to help, please consider making a tax-deductible donation, in honor of “Caden Norton”.

FRAXA's mission is to find effective treatments and a cure for all children and adults with Fragile X. FRAXA has funded over $11 million in research at universities around the world.

To donate contact FRAXA at 978-462-1866 or donate online www.fraxa.org, or send a check made out to FRAXA Research Foundation, 45 Pleasant Street, Newburyport, MA 01950, with Caden’s name listed in the memo area.

Thank you.

***This was inspired by an email I read from another Fragile X mom - it felt so good to write and let out some of the things we tend to build up over time.

178 comments:

Lisamei62 said...

You know that you all are always in our prayers, Lindee...This is a beautiful way to share Caden's journey...one that I pray will lead to a happy outcome for you all and most importantly, for him...We love you!!
Dan, Lisa, Brooke, Kelsi, and Joshua

Therese said...

Hi Lindee,

I just read your blog. I wanted to tell you that it is very well written. Your emotions are so raw in it, it brought tears to my eyes and gave me an urge to hug Ethan just a little tighter. You are such an amazing person, Lindee. Caden is so lucky to have someone on his side who will fight for him as much as you do and will.

Jennifer said...

WOW that just brought me to tears. I always tell my friends and family about my neighbor who just had twins and has a boy with Fragile X. I am always telling them what an amazing Mom you are to be dealing with so much.

You truly are Caden's "Hero" as you are to so many others with Fragile X.

SB said...

Hi from another FX mom and fellow blogger.

the other lion said...

Hi--I am a single mom with FX. My son has it, too. feel free to visit my blog at www.theotherlion.blogspot.com

Peggy said...

I too am a carrier, and have two boys with fx. You have brought us to your heart with your writing. You will amaze yourself with your strength, and ALL of your children will be the better for it. Thanks for sharing your thoughts.
I write about lots of things, including FX boys on my blog www.quiltclogmom.blogspot.com -- feel free to visit if you'd like. Take care.

Kym C said...

You have such a beautiful family!! I just saw your ad on craigslist and I wish you all the best w/finding someone who is loving and caring to take care of your family.

Maddy said...

Newbie visiting from fxsmom. Thank you for sharing this. I think you're right it does help to write it down.

As for those special words...I had to wait seven years, but I know several mums who also have non-verbal children who are still waiting.
Very best wishes

theviewfromthisplace said...

thank you for writing this. my husband and i are carriers of meckel gruber syndrome, a lethal disorder with a 1 in 4 recurrence rate. we found out the hard way with my first pregnancy. we interrupted the pregnancy at 22 weeks. it was devasting. we tried again and got pregnant with a healthy littel girl and we lost her at 23 weeks due to an incompetent cervix. it just doesn't end.
i also wonder why? why?! we lost both our babies. but we are picking up the pieces and have found a solution to the incompetent cervix issue.
i'm so glad for your miracle babies and wish you joy as you bring up your precious older child. you give others courage to try again.
i invite you to read my blog, if you'd like.

S said...

I'll be your Hero. Email me, and we can cry & laugh together. my son has FX, too.

The X Mom said...

Your story is amazing. I have two boys ages 5 and soon to be 3 with FX and a 15mo old child without it. I feel blessed to have the experience of raising a typical child, and to finally be able to see all the milestones occur when they should. I have cried more for my oldest he is more severely affected than his brother. I worry often about what will happen when I am no longer able to care for him. You and your family will be in my prayers. Stay strong mamma.

The X Mom said...

Your story is amazing. I have two boys ages 5 and soon to be 3 with FX and a 15mo old child without it. I feel blessed to have the experience of raising a typical child, and to finally be able to see all the milestones occur when they should. I have cried more for my oldest he is more severely affected than his brother. I worry often about what will happen when I am no longer able to care for him. You and your family will be in my prayers. Stay strong mamma.

Sunshine5705 said...

Sorry, it posted my comment twice for some reason.

Holly's Mom said...

Thank you for this post. It made me cry, but know you are a hero, even in your weakest moments.

If you are interested in hearing about some unpuplished research, my Daughter was the first to do a minocycline trial with Dr. Hagerman, and I wrote about it on her blog.

Holly's Mom said...

Thank you so much for sharing your story. I am planing on trying the Genetic IVF myself, I did a FSH Test, and I think I was also around the 20 mark, but I am still breast feeding, so I have to wait until after, but I am afraid, I won;t have any more viable eggs. I feel so blessed and Lucky to have Holy, and so far her symptoms have been mild, but I would love to add a little boy to our family. Your journey was inspiring, My husband worries how we could manage with twins, but we do want 3 children, I guess you just find ways to make it work!

Sarah said...

Just found your blog and am glad. We have a two-year-old with Fragile X and got our diagnosis in August.

Laurie said...

Well said.

FXSmom said...

You should post a current update :). It's been so long and I bet a million things have happened!!

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Beth said...

My name is Beth LaBossiere, and I am a senior in high school. I do community service with young adults with special needs, and two years ago I chose Fragile X Syndrome as the topic of a 3 year science research project at my school.

Along with science, making documentaries is my passion. To combine my two interests, I made a 10 minute documentary about Fragile X called "Fragile X Syndrome: The Stories and the Science". I was incredibly fortunate to meet the Bates and the Lockes. They were willing to share very personal parts of their lives with me on camera, and without them, this video would not have been possible.

The video can be seen at http://www.youtube.com/watch?v=_Flh1V3O8Wc

I am writing to ask if you would post a link to this video on your website as a way to help people further understand Fragile X and to help families see that there are other people going through the struggles and joys they are faced with. I hold the rights to the video as the writer, producer, director, and editor, but my goal is for it to be distributed to as many people as possible so that awareness about Fragile X can be spread.

Thank you for your time!

Beth LaBossiere

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