Tyler's journey to Orlando
Organized by: Misty Mahannah
Another surgery next week...
April 04, 2016
Tyler Mahannah is the sweetest most loving lil man we know. He has Cornelia de Lange Syndrome and is currently looking forward to meeting up with friends and other families at the National CdLS Conference in June 2016.
Tyler is an amazing 15 year old, non verbal young man who greets everyone with a winning smile and outgoing personality. He was diagnosed with Cornelia de Lange Syndrome in 2002.
"What's going on?", you ask...
Cornelia de Lange Syndrome (CdLS) Foundation National Family Conference, June 23-26, 2016, in Orlando, FL.
Attendees have an opportunity to gain knowledge on how to best care for their child. Attendees receive free head-to-toe consultations with experts from a range of medical and educational fields (this is important to us as Tyler has pigeon chest, causing stress on his heart and lungs); attend workshops on legal concerns, educational issues and medical/behaviors challenges (autistic behavior); and have opportunities to meet other families facing similar challenges (having a child with a rare syndrome, it is important to connect with others, we're like family). Not only will attendees be better equipped to face challenges throughout their children’s lives, but also they will leave with a sense of belonging.
Events that help connect families include a gathering for grandparents, separate get-togethers for moms and dads, and a social hour for siblings ages eight and over.
So.. what is Cornelia de Lange Syndrome? Researchers have identified five separate genes (NIPBL, SMC1A, SMC3, HDAC8 and RAD21) that, when altered, cause CdLS. (Developmental delays, physical and emotional health concerns regarding heart defects, gastroesophageal reflux disease and gastrointestinal tract infections as well.)
Having CdLS, Tyler has showed us many things and we would love the opportunity for Tyler and the board of directors along with the physicians that specializes in this syndrome to show us more. This conference is important to our family and can help us in helping Tyler lead a great life.
Thank you for taking the time out to read all this and help our family get Tyler to Orlando, Florida. Bless you.