When our daughter was born a year ago doctors told us she wouldn't survive a couple days. She had other plans. She spent 24 days in the NICU and many of the issues found during the pregnancy weren't true. It was during this time our world crumbled again when they gave us the diagnosis of Cornelia de Lange Syndrome. The doctors still were doubting our daughter's fight to survive. My mom made the first call to the foundation for us and within a couple of days we got a package full of hope and answers to many of our questions. They told my mom that when I was ready to talk that they would be there. I have called the foundation dozens of times never once rushed always having a caring ear at the other end of the phone. Without the foundation there is a good chance my daughter wouldn't be here today. With the foundation's recommendations and advice I fought to have testing done when every doctor thought it wasn't necessary. Turns out we were right and she needs to have surgery in the next week to correct the problem. My family is so thankful for the love and support the foundation has given us and other families around the country.
My son was diagnosed with Cornelia de Lange Syndrome. When I found out, so many emotions went through my head. Fear hit me like a ton of bricks. After I contacted the foundation..It was the first time from the moment he was born that I was able to take a deep breath and feel some releif. The support, education and direction provided was a huge step towards optimism. After I talked to them my family noticed a difference in myself. So did I. I had a plan and knew what to do to optimize my sons developement. They sent me so much valuable information. Within a few weeks I had learned so much about my sons condition. I call them all the time for advice and reassurance. Their knowledge is admirable considering many health care professionals are unfamiliar with this diagnoses.... Those days or moments when I feel unsure or have concerns for my sons care,my family and friends often tell me to call my "FRIENDS" at the foundation because they always seem to know exactly what it is I need with their understanding and direction. Honestly I couldn't imagine what frame of mind I would be in If it weren't for them. Being the ONLY foundation in the U.S for CdLS..their support and care is priceless.. I am Forever grateful. Im positive hundreds of families feel the same.
CDLS is beyond wonderful. From the very first time I called I was welcomed with the most caring, understanding, knowledgeable staff. I hate to even call them staff, everyone has become family. They take the time to answer all my questions, ease any of my concerns. I would be lost without this organization. ~Carol from CT.
Wonderful organization that is truly selfless, and works to better the quality of life for clients.
Excellent and informative organization. My sister has CDLS and they have provided support to our family for years now. My family still receives the pamphlets and information for fundraising. The information is key and helped us find the special doctors to treat her over the years. There has been a lot of progress since my sister was born 24 years ago.
When my daughter was diagnosed at 18 months I was devastated. I was surprised the doctors didn't have much information to give me. My daughter didn't have teeth, barely crawled, didn't talk. I was told by the genetics clinic to put my child in an institute and start my family over. I was 30 years old, I had begged God for a child. By connecting with the Cornelia de Lange Syndrome Foundation, Inc. It changed my life. I knew I was in great company. The help the knowledge, the family welcome and education was spectacular.
My niece has Cdls and the foundation has been very helpful with showing me ways to help with her care
I have received information from CDL for many years. My daughter who has Cornelia Dr Lange syndrome is 46 years old. At the time she was diagnosed, there was very little information available. The foundation was a godsend to me. She lives in an excellent group home and is doing very well. She has workshop during the week and spends Saturday with me. The magazine that is sent regularly is full of information and I couldn't't be more pleased with the foundation. I give them my full appreciation and thanks.
Having a child with a disability changes your hopes and dreams forever. Having one with a disability no one has ever heard of puts a parent further from the curve and feeling really separated from the norm. This foundation is a safe harbor for parents. Cdls foundation provides the knowledge, the understanding of the difficulties and the support so desperately needed in the troubled times following a special birth and the subsequent years of difficult transitions.