The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS make informed decisions throughout their lives.
I PRAY THAT GOD BLESSES YOUR DAUGHTER WITH EVERYTHING HE CAN DO TO HELP HER HAPPY A GOOD LIFE. SO SAD TO SE CHILDREN WITH HEALTH PROBLEMS. MAY GOD BLESS EVERYONE THAT HELPS THE BEAUTIFUL LITTLE GIRL.
I’ve only just been able to watch this. It’s 3 months yesterday since Rosie left us. So many names and faces I remember from the CdLS yahoo group. Love to everyone who knows this heartache.
We are touched today to remember our sweet daughter, Cami and the special memories and joy she brought her family and everyone who was blessed to know her. Thank you to the Foundation Team for continuing to find special ways to serve and honor our children and CdLS Family. Although we’ll shed a few tears today they are founded in deep and everlasting love we have for our children! Love to all, Hailey, Clara & Rob Rodriguez “Whatever you did for one of the least of these brothers and sisters of mine, you did it for me - Matthew 25:40
Dave Axtell, CdLS World Chairman and President, shared, “Remembering our lost CdLS people is going to be a bittersweet experience. It goes against nature for a child to predecease their parents. That loss is perhaps even more acute when that child is as precious and special as our CdLS people. The hardest pill to swallow is that we did everything right for them. We followed the advice, we listened to the experts but lost them anyway. But rather than focus on the pain of loss, we should remember the good things that our CdLS people brought us. Every achievement was that extra bit special; we got to see the world in a new way. Best of all, it brought us all into contact with this incredible global community. You are all my extended worldwide family. I would not have known you without CdLS. Most of all, I want to focus on a special little girl who changed my life forever."
Any chance I can get the transcript for this video? I have a friend/family member I would like to show this to that has no access to RU-vid. They have a baby with exact physical characteristics of CDLS, although no mention of it has been made and so far no diagnosis of any kind. All genetic testing has come back inconclusive... I only happened upon the syndrome through Gabe and Hannah's channel with the story on baby Avynn. It reminded me so much of my friend's baby. It's a delicate subject and difficult to know how to approach someone with a suggestion of what may be wrong with their baby. I thought maybe if I can show them something like this they might be more open to it...
My son has the NIPBL gene abnormality, and he has many symptoms but few to no facial features, although he does have crooked pinkies curved in, low set ears, excessive back hair, and growth issues, feeding issues that are very severe, chronic vomiting, and level 3 Autism with significant GDD suspected IDD. Does him having the NIPBL gene mutation with these mean he likely has it?
I just found this channel and wish I found this earlier. I'm glad more people are learning of this. It brings a light to those who have CdLS like myself.
The first time I’ve heard of this was a couple of days ago and his name is Sebastian and lord he’s a beautiful little guy. It’s because of his video that I’ve been watching videos on this topic. Thank you for educating everyone.
I too started watching the child by the name Sebastian a beautiful boy, and his family’s interaction is stunning you out there, please go to his channel, his parents are amazing, this brought me here, and so glad it did, thank you for the post
God bless all CDLS children and their families. It always boggles my mind that a fertilized egg is SOOOOO tiny and within that TEENY TINY start of life are even TINIER bits of DNA that can have such huge consequences.
