CDLS - Cornelia de Lange Syndrome

CDLS is a genetic disorder that is present at birth and is usually not inherited.  CDLS happens due to a change in one of the main seven developmental genes.  CDLS can happen in both genders and is seen in all ethnic backgrounds.  It is a widely variable disorder with a broad spectrum of physical, cognitive and medical difficulties and often can remain undiagnosed.  

We have been fortunate enough to work alongside a family who has a family member with CDLS.  This has been a great learning opportunity for us, and has been eye opening.  When listening to their story there were two main topics that came to our mind: The large improvement homecare has undergone over the past 16 years and the effects having a child with a genetic disorder can have on a family as a whole; parents, siblings, and extended family. 

When this family first had their baby, they were basically in hospital for the first year of life.  They had some education and minimal supports in the home.  Once home only one parent was able to work and they divided their sleep hours over the night as their child required 24/7 supervision. The struggle existed as well with the demand of fulfilling their parental needs to their other children while caring for their child with CDLS.  As you could understand this was also a difficult time for their other children as they did not have the same attention as their one sibling.  

Over the years home care has come a long way, there are many resources for families in situations like these.  Financial supports, home care supports such as nursing and personal support work, talk groups, social media groups and other family support groups etc. This list goes on.  We have been very happy to have been involved in care for this family and other families in similar situations to this.  There is nothing more fulfilling then being able to help those who have been desperate to find these supports for some time now.  We look forward to continuing assisting in their care and look forward to helping others in similar situations in the future.  A great page and organisation we have found helpful throughout this experience is www.cdlsuse.org the CdLS Foundation.   If any questions or concerns feel free to reach out to us and we will help you as best we can.