Frankie's Story

[CrazyMayze]

my friends and my bffs ex boyfriend was born 1 pound!

[slinkyb99]

MBP are you serious!!! How could anyone ever go there with a parent of child who has faced this many challenges!!! I am an aunt of young man who has EDS there were many times just playing with him he would have bruises. The only answer I can come up with as to why or how is IGNORANCE!! You have been blessed with a beautiful Girl!! May God bless you and your family and help you find the strength to live each day to the fullest!

[minkyrules]

she is just unbelievably beautiful

there would be no reason not to be proud of her

just one question

did she ever have jaundis

[CYBERJASE]

a little girl with a huge unbreakable spirit.It's a lesson for all of us who complain about really unimportant things...Keep on fighting

[nefkbbcb]

@littleEMOkid112 ~ They are basically sunglasses to protect her eyes. She was Jaundice which means her liver was immature. In order to treat it they put her under ultraviolet lights. This is called Phototherapy and helps eliminate bilirubin in the blood.

[Edwardrocks232]

she is so cute in all of these photos!

[traceymoooo]

beautiful girl and beautiful video x

[sherry5997]

i have never posted to anything before but i feel the very strong urge to reply to sdhadg"s comments - couldn't be more inappropriate. period. nefbbcb: i not only understood all but a few of those medical terms because, as i'm sure you've guessed, my family has a lot in common with yours. please don't let anyone bait you into a defensive posture when it come to caring for your family. it is hard enough... stay strong - framkie is beautiful and lucky to have you! :) sdhadg: shame on you. period.

[nefkbbcb]

@sherry5997 I apologize for becoming defensive. I appreciate you pointing that out. We didn’t learn about our genetic disorders until my last child was born. One of the most difficult things about our disorders is knowing that the genetic mutations within my children came from me… So, in that sense I do feel responsible and sdhadg’s comments were unwelcome and hurtful. However, that is no excuse to become defensive.

[silentfades]

@nefkbbcb sure its a reason to be defensive - your a moma bear and dealing with a jerk - hope sdhadg realizes Karma is not kind

here is wishing you all of the best and know your thought of

[nefkbbcb]

@sherry599 I truly believe in educating people regarding our disorders to bring awareness (that is the sole reason I posted these videos) and I need to remember how important it is maintain my composure under any circumstance. sherry5997 - Thank you for your comment and reminding me what my role is as a mother of disabled children.

[sdhadg]

3 words: Münchhausen by Proxy.......

[nefkbbcb]

@sdhadg Before making accusations please educate yourself... Münchhausen by Proxy - A psychological disorder in which a parent or other caregiver gains attention from medical professionals by repeatedly causing or fabricating disease symptoms in a child. Genetic Disorders - A pathological condition caused by an absent or defective gene or by a chromosomal aberration.

[sdhadg]

@nefkbbcb: One must ask what took me to that diagnosis. It was but a few years ago that another lady had medically diagnosed her child with many disorders and the way we knew it was MBP was the way in which she used medical terms so efficiently. I understand what Munchhausen by Proxy is, had to memorize each and every trait as well as understand the reason behind this disorder and your story is an example of this to a T. I am not a professional, but I served jury duty 3 wks memorizing MBP.

[nefkbbcb]

@sdhadg Just because you served on a jury and studied a disorder in no way gives you the right to assume others who are medically knowledgeable have Munchhausen by Proxy. It is YOUR opinion that my story fits YOUR understanding of the disorder and researching something for three weeks only gives you a window into what the symptoms of ANY disorder are.

[nefkbbcb]

@sdhadg I am medically knowledgeable because I choose to be active in the care of my children, I want to understand everything that is going on within their bodies so that their quality of life is the best it can be. What lead me to the diagnosis, genetic testing that showed mutations within the genes. I pity anyone who has disabled children that may come across your path, it’s a shame there is no cure for idiocy as this is what you present with.

[sherry5997]

@sdhadg: you do know that no one but the good lord himself can make a child suffer from a GENETIC disorder, right? hey, good job memorizing words though...

[nefkbbcb]

@sdhadg There is NOTHING I can do to change or manipulate the genetic makeup within the body…  This is completely out of my control and I pray everyday for a treatment and a cure.

[niyer07]

hey frankie,this is narayan m 30 and lost my left eye to retinal detachment when i was 4, always be positive and thing will work out for you .........cheers all the best .......!!!!!!!!!!!

[gunznroses09]

such a very beautiful girl

[agnesvizcardo]

Great story! Beautiful girl!

[ladykeys77]

Frankie.. .U are a strong young lady... stick in there.. God will take care of you.. Mom Dad... Good work

[aggreessive83]

wat a beautifull girl nothing can keep her down shes to strong xoxoxox

[engodo2525]

What great videos! From one EDS zebra to another; message me anytime!

Lisa, 17, EDS, HAE, TC, Chiari, GERD....

[iana80]

Wow... she is beautiful!!! What a gorgeous smile!

[JorJackie]

Wow! she is GOURGEOUS!

[TheDancingCarrot]

she must be about my age now! (I will be 12 on june 2nd!)

[emilyvanesashleymily]

i cried :( that is an amazing story! she is blessed! and very beautiful

[aizel90266]

This child is amazingly beautiful on the outside as well as the inside.  She is definetly going to make a difference on this world with all the knowledge that she has. The best of the best for this family all the way from my heart. lv to all of ya.

[SatanisaBeaverShark]

Wow. Dysthemia does not compare to this. This child is blessed and beautiful.

[xkiwigurl]

She turned out stunning.

Sorry about all the problems but she has made it for 11 years and she will keep on trucking for many more...

I used to have Attention Deficit Hyperactivity Disorder (ADHD) and i grew out of it so im sure she will too.

[PierreRobinAustralia]

Hi there, my son has Pierre Robin Sequence. Sticklers is one of the associated conditions of this disorder. May you and your family always love and support one another and be open to the best experiences that life can offer.

Mick@PierreRobinAustralia

[lizzy19209]

i weighted 4lb 10oz and i was about a month premature

[SugarDime]

she is absolutely gorgeous!!!

[123atuGiGi]

I also have Stickler Syndrome. I am blind in my left eye due to a retinal detachment - I am also the same age as Frankie. 11.

She must be so brave.

[ennacde]

god bless this child.

[bananamundo]

SHE IS SO BEAUtIFUL . POOR HER ..

MY BESt WISHES !

COUNt OM ME!

[kimmiesweet]

Oh, Frankie is truly "simply beautiful". There is no other way to explain such a precious gift from God. I will always have Frankie and the family in my prayers. God Bless! ^_^

[Bri0208]

she is beautiful

[nyprincess10001]

I also Have Sticklers...your child is beautiful.

5*****

[Doublenice1]

whats sticklers?

[XrugbygurlX]

aw :) shes beautiful!

i was born 3 months premature and had bradycardia (i grew out of it) i was tiny.. but im now nearly 17 and im healthy and living life to the full! i thank God for that, me and my twin sis are miracles!

I pray that your Frankie may also live her life to the fullest and experience all the world has to offer!

God Bless x