Hi,Leila. Have you been diagnosed as having SCLS (Clarkson's Syndrome)?  If so could you give us a little idea as to what happened to you? 

Hi. This is Leilas Mom . I am reaching out for Leila . She would love to connect with any of the children who have Scls and are around her age . They could email  maybe or be penpals or messenger each other ? She needs a kid who understands what it’s like have a chronic illness . 

Thank you ,

Kristy 

Kristy, I suggest you reach out directly to erintaylor, the mother of a boy named Taylor in Canada who is about Leila's age; Maccy80, the mother of a boy named Ryan who is a little older and lives in Australia; and also jessclark, lcb042012, supermansmom, and sclsusr1, though we haven't heard from them in a long while.  You can also write to Dr. Druey at NIH and let him know about Leila's wish to connect, giving him authorization to pass on your contact information, in case he can think of anybody else.

Sorry for the late reply.  I will talk to my son and get back to you . He's currently sleeping. 

Kristy,

Our son, Connor (aka Cman) is now 13, and hasn´t had an attack in six years. It would be nice if we could get some of the kids talking to each other. Let me know your thoughts on what this would look like.

Here´s a little background on him and our experience. He had his first certfiable attack in March 2009 (we didn´t know it at the time), and his worst one, nearly fatal, in Dec. 2009 when he was officially diagnosed with SCLS. He was at Children´s Hospital in Hartford, CT for nine days, and in-and-out of the ICU twice. The leak was literally choking his heart. So much fluid had built up between his pericardium and his heart that his BP was 60/35, but his heart rate was 140-150. They tapped his heart, and drew about 32 oz. of fluid from the tap in two days. He began to improve immediately. We spent Christmas of ´09 in the ICU, his little siter´s first Christmas. He had a third attack about two months later when he contracted pneumonia. His next one was around halloween of 2010, and his last was the mildest and happened in second grade. We caught this one early, and the Prednisone (sp?) seemed to stem the attack.

Because of his case, the first child diagnosed in the state of CT, another child was diagnosed with SCLS in 2012. This was done by a nephrologist, so she began seeing Connor as well on an annual basis. He still goes to her every other year. Unfortunately, the girl had an attack while her family was on vacation, and she died.

Day-to-day, he really doesn´t seem to be affected. He is active, and is a great student. I hope this helps.

God Bless!

Kevin and Jennifer Thompson

Thank you to all who responded here and via private message ! Leila is so excited to be talking to other kids with SCLS. I am trying my best to get back to everyone in a timely fashion ;) thanks again to all the parents and all the help  connecting us to other kids . 

Best wishes 

Kristy and Leila 

Kevin and Jennifer ,

Leila would love to hear from Connor . I did private message you , but I’m not sure if you received it .  Maybe the kids could talk over Instagram or Snapchat ? 

Thanks !

Kristy