TERALYNN

MY BABY GIRL that was born with 22q11.2 Deletion Syndrome aka DiGeorge Syndrome or VeloCardioFacial Syndrome.

www.22q.org
www.vcfsef.org

Teralynn's symptoms:
Ventricular Septal Defect
Hypocalcemia
Submucous Cleft Palate
Velopharyngeal Insufficiency
Retrognathia
Microcephaly
Small Protuberant, cup-shaped ears
Narrow external ear canals
Mild developmental delay
Umbilical Hernia
Nasal vomiting
Severe articulation impairment
Hypernasality
Mild growth deficiency, relative small stature
Joint dislocations

Category:

Education

Tags:

• Teralynn
• 22q11.2
• vcfs
• digeorge
• syndrome

[ilysummer2010]

Hello. My name is Nicole and I'm 24 years old with VCFS. I"ve also got a 1 year old son with the same syndrome. I've been through alot during the past few years, but as you grow up life changes. I've got the speech impairment and the learning difficulties which really suck to have. My son has had test done and everything is normal. His cleft palate is normal to and I'm hoping as he gets older he won't have the speech problem like me. I love the song. What is it called? Your daughter is cute.

[davidNtonya]

@ilysummer2010 I'm glad to hear your son has few issues do to the deletion! The song is called "Amazing" by Janelle. And thanks!

[LoveAbleCharlene]

How long was she in the hospital with all those IVs?

[davidNtonya]

@LoveAbleCharlene After her OHS she was only in the hospital for 4 days......She had NO setbacks and did great!

[mom2five08]

Tonya This is Sarah mom to Caleb 4 months with DiGeorge..

She is just sooo adorable..next to her 2 cake oin her 2 yr b-day she looks like a little doll!!!

she is so precious!!!!

[davidNtonya]

Thank you Sarah. Your Caleb is a little cutie too!

[mambolsster]

my 2 son were born with di george syndrom they have had over 30 hart ops to repair holes my oldest got a peacmaker in now and my youngers had a pigs hart put in in 2007 both doing fine now littel fighters alway got a smile on there faces never let anything get them down hope ure we girl is ok amanda x

[SophieJade1139]

Your little girl is adorable! She is so special! i have a baby sister who is 10mths now and she also has DiGeorge Syndrome! She is so sweet and i love her to bits! i really hope your little angel Teralynn is doing okay!! xx :)

[awesomepie16]

A family member of mine was born with DiGeorge. At 6 days old, she had heart surgery to fix 2 holes in her heart and a dysfunctional aorta. She recovered in half the time expected. She is starting to talk and walk now, at 18 months. THANK YOU so much for posting this video. To know that someone else has gone through what my family has gone through. Good luck to Teralynn

[chanelly1717]

wow.. shes a doll.. my god bless her... i just found out that my bby girl of 10months has digeorge.. i been going thrugh a lot well we both have... n that part were u say u can imagen what it is to hold ur bby for the nurse to but the IV.. omg i been there n it hurts realllllly bad... wish it was me... plus my daughter is a hard poker... easly they poker 6 to 7 times each time we go to the hospital... but at the end i feel LUCKY AND AM A BROUD MOTHER OG A CHILD W DIGEORGE..:)

[djholly2]

my bff has digeorge syndrome too :O

[missa19931]

she is adorable... 

[2010cowgrilprincess]

my son have vcfs. he have never had any complication thanks gog his only problem rigth know is that he dont talk

[oceanstar1224]

i also have a child with digeorges syndrom or q22 shes 14 now and doing great but she dosnt have the holes in her heart shes got the right aortic arch and a vaskilar ring sorry about the spelling and her bowls are twisting up and still weighs 68 pounds

[maximumgeek5]

She is beautiful. My son with VCFS is 9 now. Im on my sons name but write me here Id like to touch base with you.

[LoveAbleCharlene]

my baby girl is just a week old... we just found out that she has DiGeorge Syndrome... she also has a whole in her heart that needs surgery... Makes me sad and dont know how to put up with this illness... How did you manage to go through all, surgery, hospitalization, health, everything?

[hiro44744]

i have the same syndrome

[asianloser157]

I think my baby cousin has this! He had holes in his heart and also had a cleft palate D:

[rosario3gomez]

I know what is like my daugther was born with this too

[msnikki69]

i am going through it all right now, I had my babygirl nov 6...i took her home and 5 days later she went into shock.... I'm currently in the ARMY and stationed in Italy. Imagin what its like going through all this and no one understands u.  However the italians are takin really good care of Samiya Nicole Ralph. It is a blessing to see ur baby lppk as strong as she does. That gives me hope. God bless and thanks for the video

[Cblunkall]

i need help to find others like my lil girl she 1q.21.1 deletion and i cant find much her on hers at all mabe you could help? your lil one is a doll people just DONT know how lucky they are to have perf childern

[kracckers]

what a beautiful little girl. my son has vcfs and many of the same anomolies as your daughter. he is 19 now and doing great. He was not born with any heart defects and he was not diagnosed until about age 4. Every day brings something new with these kids but it's a journey i wouldn't trade for the world.

[chromosome16disorder]

she is beautiful! she reminds me a bit of my little boy. looks like you've done an excelent job with her.

[hoss12686]

This is such an uplifting video!! My oldest daughter is recently diagnosed with VCFS, and also was just diagnosed with Autism. She is lucky, and doesn't have any major problems with the disease. We are awaiting FISH test results on our youngest daughter. It is such a tragic thing that happens to our sweet angels. I remeber feeling so hopless when we found out, I have nothing to feel this way about compared to your amazing story. God Bless you for posting this video, you gave me hope!

[colmaria43]

Your video was just beautiful, brought tears to my eyes and a big lump in my throat. My daughter Sarah was also born with Vcfs and is troughly the same age as Teralynn - 4 in June. God bless

our 'amazing' children, love the music accompanying video.

[shelikestorunalone]

Teralynn is so beautiful my cousin has a new baby girl Lilah who is only 4 months old who was born with this disease. It's been a struggle and your story is truly inspirational. I had a huge favor and was wondering if you could please put the embed back on this video? It would mean so much because then I could post the video on my cousins myspace and I really think it would cheer her up and give her hope. Let me know and thank you so much and god bless.

[HidetomoArato]

She's beautiful! I was born with a lot of health problems myself and still am fighting to be healthy. This video is wonderful. :)