Ragan's making some progress!!

Ragan has global Developmental Delay's. She is 3 and a half years old now. We've been to three different hospitals trying to find out what is preventing her from developing at a normal rate. The National Institutes of Health is the most recent hospital we've visited. They have a new program there called the Undiagnosed Diseases Program. Ragan was the first pediatric patient accepted into the program. After spending an entire week at the NIH and undergoing just about every genetic test you could imagine as well as MRI, EEG, Spinal Tap, Skin Biopsy, Abdominal Ultrasound, etc. we still do not have a diagnosis. She has never had any seizures. The only symptoms she is having is being unable to walk and talk. She is still not feeding herself completely and she still eats sand when we go to the beach. Oh yeah and she's started grinding her teeth. The National Institutes of Health is the largest hospital in the US and it is funded by our tax dollars. They have access to any type of technology, specialist consult, research facilities and yet, they are stumped by Ragan's symptom's. They have deemed Ragan a Medical Mystery for now. She's been photographed for literature for other researcher's. As for now, we are just continuing with therapies and good old fashioned love. I will never stop fighting for an answer, I believe God has a big plan for my little Ragan's visit and it will include a run for being the first female president if I've got anything to do with it. As a mom, I can tell you that I struggle every day with not knowing what is hurting my poor little girl, but as a believer in God, I know that my faith will carry us through. To all the other parents, just watch the other videos I've posted of her and know that you are not alone in your journey to help your child. Sometimes Mom's and Dad's know more on how to help their child than the doctor does and my advice to you is to go with your gut. Never let a doctor tell you to give up and let your child be who they're supposed to be. Because who they are supposed to be is going to happen regardless of you pushing for answers that could someday lead to a treatment for your child. I pray that one day, stem cell therapies will be the key to unlocking that door that holds the directions for them on how to walk, talk, run, play, feed themselves and be just a happy healthy child. After all, that's all we want for our babies, is for them to be happy. Take care and good luck on your journey.

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[mnat28]

Has she been tested for Mitochondrial disease? Some of the issues your daughter has could be Mito....

Your daughter is very cute! My niece has Mito disease and epilepsy-though the epilepsy is the more noticeable and the more severe of all her issues.

God bless you and your family and keep up the good weork RAgan!

[FSUKasi]

@mnat28 Thanks and God bless you and your familay too!

[FSUKasi]

@mnat28 Thanks so much! God bless you and your family as well!!

[munkygrl31]

Have u had her tested for Rett Syndrome? My daughter, Journey is 4 & was seemingly normal til abt 9 - 12mos. I noticed that she was losing her milestones & regressing; stopped eating @ 18mos & had g-tube inserted. 2day she cant walk, talk, or sit w/o assistance. like u no1 could give me answers. I researched til I came across Rett Syndrome. IDK if this is what ur daughter has but plz take the time to look it up. It could be the answer uve been searching for. Good Luck & God Bless!

[FSUKasi]

I did think she was displaying signs of Rett's as well, but she has been thoroughly tested for Rett's with negative results.

[CountrybyAudrey]

It's good to see that she is making progress! God put Ragan here for a reason, just like my granddaughter, Kylie, to teach others. I truely believe that. I call children like Ragan & my Kylie, Our "Earth Bound Angels", they truely are God's Gift. I did a video of Kylie from birth to age 5, with the song I wrote for her, showing & describing all her surgeries, etc. , and other videos of her progress. We are still searching for answers also.

[FSUKasi]

Thanks Audrey! I sure hope you find some answers, hopefully the stem cell advancements will at least improve their lives if nothing else.

[kmorrisond]

As parent of a child with severe developmental disabilities- I disagree with Becky's outrageous attempts to bash this mother. I always say you walk a mile in my shoes and then you can judge me! I would put my child on you tube, tv, whatever it takes...to search for a diagnosis to HELP my child. Many people view these and just maybe someone out there may be dealing with the same thing and could offer her help or maybe even a possible diagnosis that can be treated. Great Job! mom

[2008jazzii]

My son also has global developmental delays (he turned 3 on New years). He was born with hydrocephalus, laryngomalacia and tracheomalacia. He still has a stridor and he just started walking a month and a half ago. Now i'm just working on speech and getting him to gain weight (his doctor ordered him to drink 4 pediasures a day). I wish you and your little girl the best, God bless.

[2008jazzii]

@beckycarson77 She's showing her daughter's progress. How is that messed up? I would be proud of myself if I was having trouble at such an early age and was able to overcome it. That just goes to show how strong some of these young children are, and that is nothing to be ashamed of.

[inscoe2000]

I would suggest a serious investigation of her nutrition. My son with GDD didn't start walking until he was two and he's still pre-verbal (2.5). He has serious gut problems that affect his nervous system, immune system, and glandular system. I only learned about these issues working with a nutritionist and osteopath, not from regular doctors.

[FSUKasi]

thanks boreilly23!!