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Avon Nonprofits and Charities

Cornelia de Lange Syndrome Foundation, Inc.

118 Reviews
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Avon, CT
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Halstonsmama

On June 21st, 2015, we welcomed our beautiful baby boy into the world. We didn’t realize it at the time, but Halston Jack Dorow was about to change our lives in more ways than we could have ever imagined. In the months that followed Halston’s birth, we noticed that he was not gaining weight, throwing up nearly every time he ate and that he was overall, just a really small little boy. Throughout various doctors’ visits which had him falling off the growth charts as well as a weekend stay at Children’s Hospital, we realized something was wrong. At the advice of his pediatrician, we met with a geneticist at the University of Minnesota. She knew at first glance what we were dealing with and in the coming months, we would confirm through genetic testing, that our tiny baby had Cornelia deLange Syndrome or CdLS. CdLS is a rare genetic condition present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive and medical challenges and affects both genders equally. On March 15, 2016, we embarked on our CdLS journey having no idea where it would lead us. We were scared, we were angry. Hearing those four letters, CdLS, was like a knife to my heart. There was no cure, this was forever. What would his forever look like? How long do we get to keep him? What would he miss out on in this life? What would we miss out on? Some children with CdLS never walk, they never talk, they may lose their sight or hearing. Some will struggle with feeding and will be unable to eat by mouth, so a G-Tube is the only way to get them the nutrients they need. Some may have heart defects or kidney issues. Nearly all will struggle with lifelong gastrointestinal issues causing severe pain in their little tummy’s. <br> <br>Fortunately, Halston does not have the majority of these issues. His heart is strong, he can see and hear. His first word was “Mama” and what a glorious sound that was. I will never tire of hearing him shout it from the other room. His vocabulary includes so many more words these days and doctor visits are less frequent than we were anticipating. Still, Halston does face some daily challenges. If he gets a cold, it takes him nearly a month to recover. He is not able to chew food, so his diet consists of purred foods and whole milk. He is in therapy four times a week, both Physical and Occupational as well as feeding. For months he wore out the backside of nearly all of his pants as, at almost three years old, his only means of transportation was scooting around on his little bottom. Then out of nowhere, on February 6, 2018 at two years, eight months old, Halston got up and walked and he hasn’t stopped since. <br> <br>Upon Receiving Halston’s diagnosis, we reached out to the CdLS Foundation and were met with an abundance of support. The staff really cares about each and every person they come in contact with. They are there to talk with you when you need advice & have questions that few can answer simply due to the fact that the syndrome is so rare. This is a non-profit organization that puts on a family conference every two years so that people from all over the country can come together and meet with medical professionals, dentists and therapists who specialize in CdLS care. You can connect with other families navigating the same path you may be on. For four days, you feel like you are among family, even though you may have never met. <br> <br>For now, our world is comfortable. I know that there are going to be many uphill battles as our son gets older and we will cross those bridges when we get there. At this moment in time, everything is as it should be. We have a happy healthy little boy who loves life, his big sister and his puppy George. He loves running around the house and dancing to music. He greets us with a “Hi Mommy or Hi Daddy!” when we walk in the door, blesses us when we sneeze and offers up kisses and I love you’ s to anyone who wants them. He has made us more understanding, more compassionate and has touched the lives of everyone who knows him. He is a fighter and he is destined to do great things in his life. He already has… We don’t know what the future holds for our family, but right now, life is pretty darn good.

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