Frankie's Story

Frankie was born 8 weeks premature, weighing 3lbs 12ozs. She was diagnosed with Bronchopulmonary Dysphasia, Apnea, Bradycardia, Patent Ductus Arteriosus, Atrial Septal Defect, and Gastroesophageal Reflux Disease amongst other things. She is now 11 yrs old and is currently diagnosed with Reactive Airways Disease and/or Chronic Lung Disease, Gastritis, Gastroesophageal Reflux Disease, Attention Deficit Hyperactivity Disorder, Hypophosphatasia (soft bones), and a non-specific connective tissue disorder which presents as Ehlers-Danlos Syndrome vs Sticklers Syndrome (retinal detachments and joint problems). She has had a dislocation, suffers from many skin problems including poor wound healing, and is at risk for retinal detachment due to optically empty vistreous. She has had a total of four surgeries one of which left her with atypical Granulomas of unknown etiology (likely a result of the non-specific connective tissue disorder which relates more commonly with Ehlers-Danlos Syndrome). She has come a long way in 11 years. She has an amazing spirit and a kind heart. Sometimes I wonder if God made the ones who have more challenges a little extra spunky! For more information please click on the links below:

http://www.emedicine.com/PED/topic1126.htm

http://ghr.nlm.nih.gov/condition=hypophosphatasia

http://www.ednf.org

http://www.stickler.org.uk

http://www.marchofdimes.com/prematurity/prematurity.asp

The song in the video is Let Them Be Little by Billy Dean. No copyright intended.

Category:

People & Blogs

Tags:

• Premature
• Baby
• BPD
• Apnea
• Bradycardia
• PDA
• ASD
• GERD
• Chronic
• Lung
• Disease
• Hypophosphatasia
• Let
• Them
• Be
• Little
• Billy
• Dean

[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.

[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.

[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.

[JorJackie]

Wow! she is GOURGEOUS!

[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.

[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

[Edwardrocks232]

she is so cute in all of these photos!

[traceymoooo]

beautiful girl and beautiful video x