Відео

Very well presented 👏🏻

OMG THAT'S WHERE I GO

Hi my daughter has just been diagnosed with Costello syndrome so is positive to see the videos of your daughter thanks

My Son was diagnosed with Costello at the age of 9 and my self at the age of 47 at the time of Diagnosis, Also My Brother, His Son and my other nephew also diagnosed. 5 total in 1 family. My son now 12 in may 2022 We have had to learn a LOT about this and I am understanding my family is the only registered family in Wales UK with this. With MANY MANY Thanks to Colin Stone for every tiny bit of help we would not be where we are now

We want to add an Arabic translation if possible, please

❤❤❤

Thanks for sharing this!

صباح جميل مع اجمل فتيات العالم هم فتيات كوستيلو سندروم

How beautiful and wonderful you are Costello Sundrome

Happy Birthday !!

Beautiful! I will be showing Sharitza this. She will love it as much as I do 💖

Erin, you are such a brilliant inspiration. Thank you!!! 💖

What sweet children they all are.

Please look at my little boy he was just diagnosed I wrote a post on face book for you Erin you helped me alot today!!!! thank you facebook.com/samm.familyfirst/posts/169596546739675?comment_id=169606236738706&notif_t=like

Thanks so much for sharing this, I am a Speech Pathologist working with a child with Costello and this was great to watch!

Wow, what a beautiful & inspirational girl!!! I don't know her nor have I met her but she holds a special place in my heart & prayers. My 5 year old goddaughter/niece has Costello Syndrome & I live with her & her mother, my sister who is a single mom. So I help her take care of her little sweetheart who Iove like my own child. I love her more than life itself & would in a heart beat give my life if it could help her. So when I see Helaina I see so much of my little girl in her, if mine grows up to be a tenth as strong & brave as Helaina I'll be so proud! Take care Helaina! We here in Syracuse, NY love you & are rooting for you!!! You also are so lucky to have such amazing parents! Take care!

Wow, you are an inspiration! My goddaughter and niece MacKenzie has Costello Syndrome & I love her more than life itself. You give me so much hope!!!! You are a beautiful and articulate, brave young woman and I wish you the best!!!!

all the best amber. take car. thinking of you. Xxxxx

Nervous. To the derm tomorrow with my 2 1/2 year old to find out about her cafe au lait spots. Its 4 am and I can't sleep

Hi, Thank you for your comment. RASopathies are being researched around the world and I hope you find some answers soon

I currently suffer from an unknown rasopathy I have multiple cafe au lait spots, skinfold freckling, giant cell lesions(mainly in upper and lower jaw) some soft tissue giant cell lesions, devlopmental delays in early childhood, and a rhabdomyosarcoma when I was 3. Strangly I do not have any heart defects, facial characteristics of noonan syndrome, or neurofibroams, or lisch nodules (am 26 years old.)