CARE about RARE- Support Awii's CALI Conference Journey♡
Organized by: Eva Viera
Happy 4th of July!! Proud to be an AMERICAN,USA♡
July 04, 2016
Aldrick was born 29yrs ago with a rare condition named Wolf-Hirschhorn Syndrome. This affects 1:50,000 children in the U.S. Aldrick has been a little warrior and has survived beyond what drs had expected. He has chronic health issues and some have been life threatening . His medical conditions include Intractable Epilepsy (seizure disorder),Panhypopituitarism,Adrenal Insuficiency,Atrial Septal defect of the heart and has a G-feeding tube, he also uses a wheelchair. Despite all his conditions he is a very happy young man,enjoys outdoor outings like fishing,live bands & festivals and loves to laugh and be silly at times, has a great little personality.
Aldrick is Non- verbal and signs a bit. His mental functionality is at about a toddlers level yet he understands very well. In these past 2 yrs he has regressed unfortunately from walking with poor balance to scooting on his butt to get around the house, due to hip fracture from a drop fall seizure since 2yrs ago. All that hasn't stopped him from moving around on his own and is transported in a wheelchair most of the time.
In July, a very important National Wolf-Hirschhorn Conference for families with kids of this same genetic deletion will be in Los Angeles area. A group of Geneticists/scientists from Salt Lake City,Utah have taken on doing research on this genetic condition and will be in attendance and involved with the afflicted during the duration of the conference. Many WHS children from all over the world will also be attending and this helps get families together to share stories,medical history and helps new parents what to expect with their fragile child. It also raises Awareness about this rare condition to the outside world.
This will give Aldrick the perfect opportunity to meet some new friends, and also have fun by going to Disneyland for the very first time. Aldrick is a child at heart,even though he's an adult he is only 48 inches tall & weighs a mere 45lbs. Please help his dream come true, if you feel it in your heart just to see him SMILE! Please help us by sponsoring his journey to California! Every lil' bit helps♡ Thank you♡ God Bless♡