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Colin Stone
Registrace 28. 05. 2007
support and information for costello syndrome
Helaina stone dancing at her 21'st birthday party
Helaina stone dancing at her 21'st birthday party
zhlédnutí: 47
Video
Feeding issues and solutions in Costello and CFC syndrome
zhlédnutí 43Před 2 měsíci
From the UK Costello & CFC syndrome family conference held in Manchester 2023. A presentation about feeding issues, language and communication #Costellokids #Costello syndrome #CFC syndrome
2005 costello conference remastered
zhlédnutí 98Před 2 měsíci
A short video from the 2005 costello syndrome family conference. This video has been remastered to improve the quality #costello syndrome #costellokids
1999 international Costello Syndrome Conference
zhlédnutí 237Před 2 měsíci
Costello Syndrome is a very rare genetic disorder. The international Costello Syndrome Support group was founded in 1995. It was though at the time that there were just 28 people in the world with Costello Syndrome. By 1999 there were over 50 families within the support group, and we held our first conference in Birmingham Alabama. This video documents the conference. Since this event took plac...
Growth hormone and costello syndrome
zhlédnutí 14Před 3 měsíci
A presentation made at the 2007 Costello syndrome symposium by Dan Doyle, MD on growth hormone
Genetics of Costello and CFC syndrome
zhlédnutí 44Před 3 měsíci
The genetics of Costello and CFC syndrome. Updated and presented at the CS&CFC family conference held in Manchester 2023. Please note: Due to a technical issue the first 60 seconds of this recording are missing
cardiac manifestations of RASopathies
zhlédnutí 93Před 5 měsíci
A presentation from the UK Costello and CFC family conference about the heart and the problems in all of the RASopathies, including both costello and CFC syndrome
Orthopedics in Costello and CFC syndrome UK Conference 2023
zhlédnutí 196Před 6 měsíci
A discussion about Orthopedic issues in COstello and CFC syndrome. A presentation from the 2023 UK CS/CFC family conference held in Manchester UK
Growth in Costello and CFC syndrome
zhlédnutí 121Před 6 měsíci
A video discussing growth and growth hormone use in Costello and CFC syndrome. Video presentation from our UK 2023 family conference, and also includes information about recent reserch
conference dance 2023
zhlédnutí 33Před 9 měsíci
Helaina dancing at the October 2023 international Costello syndrome / CFC syndrome conference held in Manchester.
Tv News report about Costello syndrome
zhlédnutí 214Před rokem
Tv News report from the Costello syndrome family conference in 1999
Helaina from dress to cup
zhlédnutí 99Před rokem
From dance dress to cup. Helaina loves to dance, here she is getting a new dress then competing.
Dancing at Wythenshawe forum June 2022
zhlédnutí 151Před 2 lety
Back Dancing at Wythenshawe forum. Helaina had a ball
Dancing at her dance schools christmas show 2019
zhlédnutí 58Před 3 lety
Dancing at her dance schools christmas show 2019
Dancing at her dance schools christmas show 2018
zhlédnutí 30Před 3 lety
Dancing at her dance schools christmas show 2018
Helaina's 21st birthday party - long version
zhlédnutí 34Před 3 lety
Helaina's 21st birthday party - long version
Helaina's 21st birthday party - short version
zhlédnutí 39Před 3 lety
Helaina's 21st birthday party - short version
Very well presented 👏🏻
OMG THAT'S WHERE I GO
It's a great venue. Helaina was dancing there 2 weeks ago
Hi my daughter has just been diagnosed with Costello syndrome so is positive to see the videos of your daughter thanks
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
@@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
@@timmychapman9362 Which hospital. ? In the UK the expert in CS is Emma Burkitt-Wright
@@timmychapman9362 she is at Manchester children's genetics department. Also I can send you some information which could help.
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.
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
Could you please let me have more information. A translation would be helpful
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
@@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
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
❤❤❤
Thanks for sharing this!
صباح جميل مع اجمل فتيات العالم هم فتيات كوستيلو سندروم
thank you
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¬if_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.)