Help me raise $500 for the CARES Foundation!!!

CLICK HERE TO HELP MARISA RAISE $500 FOR THE CARES FOUNDATION!
So if you have click through to my "other blog" thank you! Now here are the reasons that I do what I do...Jake, Mia and Shelby...my babies...If you read below you will learn about me and everything that makes me...well, me. From 1 mother to another, from 1 parent to any other parent out there...please help me raise this money. There are thousands of very worthwhile causes out there...this one happens to be mine and I have been given it for a reason.

I want to make a difference for my children and this might help in some way. It may seem like a small donation for my charity, but NO donation is EVER small.

My story is below...my life has changed, only for the better...almost 5 years ago today...Happy Birthday Jake...life would not be the same without you. And to you Shelby...I am so glad that we meet...my life has only been better since you arrived. Thank you all once again for your support!

Shelby Grace is here!

For those of you who know my personal story, Shelby Grace was born on Monday, August 24th. She was diagnosed with SWCAH via a CVS test (the same as her older brother Jake). I had a very difficult pregnancy, but the light at the end of the tunnel has arrived and she was WELL worth the wait!

Because I was proactive with our Dr's, Shelby was started on her medicine 8 hours after she was born. The state of Florida DOES test for CAH under the PKU umbrella of tests done un the hospital just after birth. This is how we learned that Jake had this condition. We know that Shelby has a wonderful life ahead of her. I am so blessed that this little bundle of joy is here...she was meant to be born into this world for a reason. We love you Shelby!

Dexamethasone and Breastfeeding

I know that this might be a common question among parents that are expecting a child with or without CAH, but are awaiting results. I am expecting a daughter with SWCAH and have learned ALOT throughout this pregnancy. I had recently contact Dr. Maria New, a world leader in research and development pertaining to CAH (she has literally dedicated her life's work to this disorder). Here was my online conversation and the valuable information that I would like to pass on to you.

Marisa's Inquiry:

Good Morning Dr. New!

My name is Marisa Langford and I spoke with you in April 2009. I live in FL and my doctors at Florida Perinatal have sent all my CVS tests to Mt. Siani to you for results.

My husband and I are both silent carriers. Our 1st son has SWCAH, our 2nd daughter is not a carrier and our 3rd daughter (due August 31) has SWCAH.

I am writing in regard to a question I have about the dexamethasone and breastfeeding. I have been on dex since April 2009.

I do realize that I will have to ween myslef off of the dexamethasone, but how will that effect me breastfeeding my child as I would assume that the dex would pass to her through my breast milk. My son was started on Cortef at 4 days old and our pedi-endo, has said that our baby will start sooner as she has already been diagnosed.


My fear is that I would be over supressing her with too much medicine (my dex and her cortef) and this is why I am contacting you.

What are my choices and what do you recommend to do in this situation. I would like to breastfeed, however if I DO NOT want her over supressed with medicine. Please advise me as to how this situation is handled as I need advice. I have also cc'd Suzanne from the CARES Foundation as any advice on this topic would be wonderful to reference for other mothers in my situation too. Thank you both for your time.

Dr.New's Response:

Dear Mrs. Langford,

I have the following responses to your questions:

1. I have never weaned a patient under my care who is treated with dexamethasone during the pregnancy until delivery. The patients all stop their dexamethasone treatment abruptly upon giving birth. None have reported any negative side effects from discontinuing dexamethasone treatment after birth. Logically, it would seem that weaning makes no sense, as the dose to the pregnant mother is very low. Further, the newborn's adrenals are not suppressed as the 17-hydroxyprogesterone in the affected newborn is very high, indicating the fetal adrenals are not suppressed. It would seem very unlikely that mother's adrenals would be suppressed, if the fetal adrenals are not suppressed.

2. It is unlikely that your newborn baby would be oversuppressed from dexamethasone in your breast milk, even if you continued the dexamethasone, the level of which would be waning in your blood. However, this could be monitored by measuring the 17-OHP level in your newborn. (Of course, if you discontinued the dexamethasone at birth, this would not emerge as a problem.)

I think I have the greatest experience in prenatal diagnosis and treatment, and my policies indicated under #1 and 2 have been successful. I understand that you have told my assistant, Claire Gilbert, that you suffered from dex withdrawal in a former pregnancy. Are you sure that your symptoms could be attributed to dex withdrawal?

Please do not hesitate to contact me further for questions.

Sincerely,
Maria New, MD

Maria I. New, M.D.
Professor of Pediatrics
Professor of Genetics and Genomic Sciences
Director, Adrenal Steroid Disorders Program
Mount Sinai School of Medicine
Department of Pediatrics
One Gustave L. Levy Place
Box 1198
New York, NY 10029

My CAH Pregnancy Story (Part 1)

I have been asked by several people if I would share my experience about carrying a daughter with CAH full term, all while being on Dex (short for dexamethasone). I am more than willing to talk, e-mail, converse, answer questions to ANYONE who has to make similar decisions about the cards that they have been dealt to deal with. (Also, I need to write as a disclaimer that what you are about to read is based on decisions I have made personally and are not in any way associated with the CARES Foundation or any other organization.) I will be breaking this story up as it would probally be WAY to long for anyone to read all at one time. But if you want to contact me talk directly, please do so!

My story can begin on New Year's day when we found out we were pregnant. I KNEW that I was pregnant but my beta test came back negative, and then a week later, it was confirmed via another beta! So being that this is my third pregnancy, 2 pregnancy for me to worry about the results of a CVS, my husband and I discussed me going on dex.

I should back up the story to my 2nd pregnancy. Jake, my 1st, was born and diagnosed with CAH on day 4 of life. He is amazing and we take extremely good care of him. He has an amazing pedi-endo, and we are on top of levels every 3 months. He has olny been in the hospital 1 time with the rotovirus at 6 months, and we have had no major crisis since that day. We are VERY fortunate to have a healthy boy who is a SWCAH child.

We were not expecting to have any other children, but low and behold, Mia was conceived...and we were terrified of what we had done. Jake and Mia are just 14 months apart. So the newness of having another child was part of it, but also know what we might be up against with us being silent carriers of the CAH gene. I immediately went on the dex, but honestly, I did so because I was told to do so...I really hadn't done much research or knew my way around the CAH community as I do now. The dex was a very hard drug for my body to get used to. You adjust as one does for any type of medication. The biggest adjustments were the insomnia and the increased appetite. I would just tell my husband that could never get that FULL feeling. Very strange.

We did do a CVS test through Florida Perinatal and the first set of results told us it was a girl. Honestly, I was so sad. I had always wanted a little girl, but now I was even more worried about what the 2nd results would be. So thousands of rosery's later, we did get that call, that said she was healthy and not a carrier. I can easily remember the time and place we got the call. I stopped taking the dex immediately, but MY body crashed. I didn't realize that I was probally going through withdrawl symptons, but I slept for what seemed like a month and didn't eat very much at all.

Attention all FL CAH families! I need your help!

I have been very fortunate to have come into contact with some VERY impressive support group leaders who are implementing programs that effect the CAH community and their families in their states. I personally will be starting to also try and tackle some of these programs that will benefit our children in case of emergencies. I will need the support of families as strength in numbers is always better. Please contact me directly if you are in the Tampa, FL area as this is the city I will be starting in and then moving on from there. I am anxious to get started. Please contact me directly marisalangford@msn.com I look forward to meeting you!

CARES Foundation

Since 2004, when Jake was diagnosed with CAH, at 4 days old, we found the CARES Foundation online and I have been amazed ever since. This foundation is so important to people like myself who had no guidance or anywhere to turn when a diagnosis is made with your child. Being a new Mom, learning the ropes of motherhood, all in addition to learning about a rare disease that now becomes top priority because without learning about it, your child will be the one who suffers...is all SO much to take in. With the support of CARES through phone calls and online direction as to how to educate myself on CAH, I can now say that over the past 5 years, I am confident in my understandings of this rare disease and would like to start to help more people who feel just as lost as I did at the beginning of my journey.

I am going to attempt this through assisting more people in FL who might need assistance or just someone to talk to (and for those who know me well, I am always one to listen and talk).

This is not an easy task. Learning about how to care for a child with CAH is wearing on the parents. We as parents only want to best for our children and sometimes it is just nice to talk to someone who has been through the same types of experiences. CAH is still so rare and many questions come with many "possible" outcomes. Personal experiences are one of the best ways to learn.

A huge thank you to all of the main CARES people in NJ and especially to Debbie Brown. She has been a wealth of information and such a nice person to speak with.

For all of you who I am so excited to meet, please know that I am available at any time to talk, pass along information or give you any insight to my personal experiences with my son and soon my daughter. I have learned alot through ecperience with CAH, doctors, medicine, etc. I hope that some pieces might help someone out there as I remember how scared I was at the beginning. There are great people out there to help. I hope I can be one of them.

Inspiration

So it is 4:05 in the AM and if you know anything about my 3rd and last pregnancy, you would know that this is a normal wake up time for me these days. Well, it has been a while since I have been able to keep up any of my blogs...yes, I know it's corny, but honestly, I seem to not be able to keep a journal for the life of me, and writing online seems so much more doable these days. I feel I have so much to tell, no one to listen (not that I care) but maybe someday people will find this and maybe be inspired...I am all about inspiration these days. Alot has happened in 2009 (and it's only July) that I have been trying to grasp everything and it's meaning as to why me...why us...why to the people I love...

I am exactly 30 weeks pregnant with Shelby Grace and can't figure out how I have actually made it this far. I didn't think it would happen towards the beginning of this pregnancy. This entire pregnancy has been an experience I will never forget and I believe that it has made me an even stronger person for myself, my children and my family. Shelby is my light at the end of this tunnel my family and I seem to be swimming in. I cannot wait to meet her and introduce her to the wonderful people I have in my life.

Life. That's another topic I have been struggling with these days. I seem to look to more people for inspiration to help me realize how lucky I really am. Yes, again, I know this all sounds so cliche, but it's just the way I fell these days. Keeping a positive attitude and focusing on what I have, not on what I don't...what I can do...not on what I can't do...how I live each day, knowing that I am lucky to be here for my family and my children helps me focus on the more important things in life.

I started to re-read The Last Leacture again today. I haven't picked up a book (unless CAH related, parenting related or trashy magazine/ gossip related) since 2004. It really has been a while and it's honestly been too long. This book is inspiring. Inspiring because you, the reader, are not in his shoes. I can do all the things that this man so desperately wants to do, but won't we able to. Certain things get to me these days and this is one of them. If you haven't read the book, go get it, or watch the lecture on You Tube.

I hope that I will be able to post more things on this site that might inspire someone else. I don't feel I am a good writer at all. I don't expect people to follow my blogs, or listen to me be philosophic. I am a terrible speller (please excuse any grammatical errors). I would love to leave behind more than just material things for the people I love while I am here. I want my children to see that being a good person, inspiration, faith and positive attitude are what it really takes to get through life. Chance, Jake, Mia and Shelby are my inspirations. I hope you find yours...

Thank you to everyone!

Well, we are already into Spring 2009 and the Gasparilla 1/2 marathon has come and gone. So much has already happened in the past 2 months I am not really sure where to begin! Unfortunately, I was unable to compete in any race during the Gasparilla Distance Classic this year. We are expecting our 3rd child in September, and I have been very ill with the beginning of this pregnancy. Fortunately, my husband Chance, was able to train, run and finish the 5K with our friends, who were also running supporting Jake. I just wanted to thank those who ran and those who donated to the C.A.R.E.S. Foundation. It is a wonderful organization that is near and dear to our hearts. I plan to train and run again (soon) as I will continue to support this organization.

TEAM C.A.R.E.S...ARE YOU IN???

WOW! Has 2008 really gone by that fast? I can't believe that 2009 is almost here. Mia, my youngest, just celebrated her 3rd birthday today. Life truly goes by quicker than you think and I can't be more thankful for my families health, happiness and most of all them. I am ready to jump right into 2009 and live life to the fullest. Why not!? Always a good motto: Go BIG, or GO HOME!!!

So, with that being said, Gasparilla 2009 is right around the corner and I am ready to sign on for the 1/2 marathon this year. And I also wanted to thank EVERYONE who supported me in my efforts last year (and of course Eric, my running partner...thanks for inspiring me with your drive. It really means more thank you know.)

Any takers to run along side me this year? (Tennille, I know you're in!) I know it is going to be a real challenge (the 10K last year was my longest run ever) but I am ready. I would love to have anyone on my team that wants to help make a difference for the families across the nation that look to The C.A.R.E.S. Foundation for support. They are amazing for what they do for families like mine. If your in, e-mail me marisalangford@msn.com and start training!

If this is your first time on this site, please read below for more information on C.A.R.E.S. Foundation and about my precious little boy, Jake, who I thank God for everyday that he is as healthy as he is. We are among the blessed...

THE BIG DAY!

So the big race day wa Saturday morning and I was up at 5:30 because I couldn't sleep. I was going to pick up Eric and then we would drive down to the race site. We both forgot safety pins and had to make a trek to the convention center before the race started (note to self...never forget safety pins for a race again!!!). There were a record number of participants at the race. I think they said like 8,700 people. It was a beautiful day and I was pumped. It was great to have Eric there for support too. (He blew my time away so he was a great motivator too!)

Once the race started, all I could think about was how lucky my family is to have such awesome freinds and family members to support Jake's cause. It really meant so much! I ran the whole race. Eric finished in 72 minutes and I finished in 90 minutes.

It was a great feeling to finish. Not only because it was not an easy race to train for, but because Jake has a long road ahead of him and I know that with love and support from family and friends, he too will lead a happy and healthy life.

Thank you so much Eric for partnering up with me to do this. And to everyone who donated money to the C.A.R.E.S. Foundation, thank you. From the bottom of my heart, thank you. Until next year...maybe a 1/2 Marathon...who knows...I would run to to ends of the Earth if I knew I could make a difference in someone's life. And because of you all, I know that I did!

Team C.A.R.E.S.

My good friend, Eric Rabinovitz, will be joining me on Saturday to run for Jake. I know that we will make a great team. I can't thank him enough for his support in helping us raise money for a good cause. It really means alot...thanks so much. If anyone else would like to join us. You know where to reach me!

Training Hard...

This is the last week of training! My two training coaches, Jake and Mia, are usually there to cheer me on. They are starting to get heavy. Adding an additional 60lbs to my training should get me in shape pretty fast. This picture was taken this morning at Rivercrest Park. Saturday will be here soon!

This is Jake.

This is Jake, or JJ, as most people know him. He looks like any other 3 year old little boy. Would you guess that Jake as born with a rare disease, CAH? What is CAH? What does CAH stand for? How does JJ deal with CAH? Read on and through this site, I hope that you can learn more about JJ's condition and what we can all do to help bring about a cure for CAH, maybe sometime in his life.

Also, please post comments. I would love to hear from friends and family. It is only with your support that Chance and I have been able to cope knowing that you all support us as much as you do.

I run for Jake.

As I am running towards the finish line, this is what is goes through my head...

Run. Faster. Harder. Why am I doing this? For Jake. I run for Jake. (I start to pick up my speed as the adrenline begins to start flowing.) I run for Jake. I run for Jake to live one more year. I run for Jake to live one more week. (I am now starting to sprint as I feel unstopable. Like a mother lion fighting to protect her cub, I begin to believe that I have the power to save my son.) I run for Jake to live one more day, one more minute. This is why I run.

The Gasparilla Classic will be here in 5 days and I am preparing for my first 15K. I have always been in shape, but with a cause to run for, I seem to run stronger.

My goal is to raise $500 that will all go to the C.A.R.E.S. Foundation for education and advancement of research to bring about a cure of Congenital Adrenal Hyperplasia (CAH) while providing the resources and the latest information available in managing life with CAH. They were the only resource that I had to turn to when Jake was diagnosed with CAH. I don't think I would have been able to become as educated as I needed to be without their help.

If you would like to donate, please make checks payable to the C.A.R.E.S Foundation and send them to:

Langford Law Group
ATTN: Marisa Langford
1715 W. Cleveland Street
Tampa, FL 33606

Or you can also donate via PayPal. Send your donation to mcornejo19@hotmail.com. I will issue a reciept from every transaction will be e-mailed/ sent for your records regarding your donation to the foundation.

Jake is my inspiration and my reason to support this cause. Please help me in my efforts to find a cure...there is one out there somewhere...we just need to find it.

What is the C.A.R.E.S. Foundation?

CARES Foundation, Inc. is a tax exempt, non-profit, educational 501c(3) organization. Its purpose is to educate the public and healthcare professionals about all forms of Congenital Adrenal Hyperplasia, its symptoms, diagnostic protocols, treatment, genetic frequency, the necessity for early intervention and benefits of newborn screening. It is also dedicated to providing support and information to affected individuals and their families. CARES Foundation, Inc. can only continue its work through your tax-exempt donations and support.

If you would like to learn about Jake's rare disease please click to go to the C.A.R.E.S. Foundation website.

I CARE for Jake.

For all of you who are reading this blog for the first time, and don't know who Jake is, let me introduce you to my son, Jacob James Langford. Jake, or JJ as friends call him, is a fun energetic and loving 3 year old little boy. His laugh and outgoing personality are sure to brighten any room he enters. He plays soccer, goes to preschool, loves Bush Gardens, his friends, his baby sister Mia and he has the most beautiful smile you will ever see.

But, never in a million years would I have dreamed that I would be writing words like I am today. We all see sick children on telethons and thank The Lord that we have healthy children. But the pictures before you are of my child, someone who is related to you by blood, by love or by friendship. He does not look sick by any means. He is happy, healthy, and full of life. You wouldn’t know that this little boy has been through so much in 3 years. Everyday is a blessing to have JJ in our lives.

At birth, JJ was diagnosed with a rare disease called Congenital Adrenal Hyperplasia. With medicine, JJ will live a health, normal life with CAH. We were fortunate to have found love, knowledge and support from the CARES Foundation to learn how to manage this life-long disease. New research and development will help JJ throughout his life and maybe, just maybe…one day there will be a cure.

Chance and I pledge to never give up hope that one day there will be a cure for JJ. Through the CARES Foundation and your support, we hope that all who CARE for Jake will help us raise money to assist the C.A.R.E.S. Foundation is their efforts to help educate the public and the medical professionals about CAH, the necessity for early intervention and advocacy for newborn screening. Everyone CARES...I care for Jake. Who do YOU CARE for?