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Пікірлер
@DexterPlayz_Productions 5 ай бұрын
Very well presented 👏🏻
@Alison123-w5p 8 ай бұрын
OMG THAT'S WHERE I GO
@bubblehelp 8 ай бұрын
It's a great venue. Helaina was dancing there 2 weeks ago
@timmychapman9362 2 жыл бұрын
Hi my daughter has just been diagnosed with Costello syndrome so is positive to see the videos of your daughter thanks
@bubblehelp 2 жыл бұрын
Hi thank you for your kind comment. Where do you live? We are in Manchester England. If there is anything I can do to help. Or if you need any information please get in touch. You can reach me via our website. HTTPS://www.costellokids.com I would love to call and we can have a chat. The important thing to remember is that most people with CS do amazingly well. Take care.. Colin
@timmychapman9362 2 жыл бұрын
@@bubblehelp thank you very much means alot. Unfortunately our daughter is in hospital at the moment but hopefully when home we will be in touch. We live in Lincolnshire England
@bubblehelp 2 жыл бұрын
@@timmychapman9362 Which hospital. ? In the UK the expert in CS is Emma Burkitt-Wright
@bubblehelp 2 жыл бұрын
@@timmychapman9362 she is at Manchester children's genetics department. Also I can send you some information which could help.
@timmychapman9362 2 жыл бұрын
Thanks for always replying Collin, unfortunately we said goodbye to ivy-mae on the 6th, aswell as Costello syndrome she was also diagnosed with a mitochondrial disease called Leigh syndrome.
@pezzermra 2 жыл бұрын
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
@ahmedabdelglel7579 2 жыл бұрын
We want to add an Arabic translation if possible, please
@bubblehelp 2 жыл бұрын
Could you please let me have more information. A translation would be helpful
@ahmedabdelglel7579 2 жыл бұрын
I have a daughter with Costello Syndrome and we are from Egypt and I want an Arabic translation because we are here in Egypt. Information about Costello Syndrome is very weak and almost unknown.@@bubblehelp
@bubblehelp 2 жыл бұрын
@@ahmedabdelglel7579 thank you for replying. Unfortunately I do not know any Arabic. So am unable to translate However I can be of help to you. I founded and run the international Costello syndrome support group. Are you on Facebook. If so please contact me. Search for costellokidsuk
@bubblehelp 2 жыл бұрын
If you get in touch I will send you some more information. I will send you the English version and a Google translate version which will help you and your doctors
@faysalkojo4452 3 жыл бұрын
❤❤❤
@VastlyMoon 3 жыл бұрын
Thanks for sharing this!
@faysalkojo4452 3 жыл бұрын
صباح جميل مع اجمل فتيات العالم هم فتيات كوستيلو سندروم
@bubblehelp 3 жыл бұрын
thank you
@faysalkojo4452 3 жыл бұрын
How beautiful and wonderful you are Costello Sundrome
@fidhjhwnkkh1622 3 жыл бұрын
Happy Birthday !!
@shakiramorales5059 3 жыл бұрын
Beautiful! I will be showing Sharitza this. She will love it as much as I do 💖
@GlitterTacosss 4 жыл бұрын
Erin, you are such a brilliant inspiration. Thank you!!! 💖
@Celtic505 5 жыл бұрын
What sweet children they all are.
@samanthamichael294 8 жыл бұрын
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¬if_t=like
@allykatblue 9 жыл бұрын
Thanks so much for sharing this, I am a Speech Pathologist working with a child with Costello and this was great to watch!
@Celtic505 9 жыл бұрын
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!
@Celtic505 9 жыл бұрын
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!!!!
@bubblehelp 11 жыл бұрын
all the best amber. take car. thinking of you. Xxxxx
@ambermaxwell2525 11 жыл бұрын
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
@bubblehelp 12 жыл бұрын
Hi, Thank you for your comment. RASopathies are being researched around the world and I hope you find some answers soon
@LukeL007 13 жыл бұрын
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.)