Xanders Everest Challenge (XEC) for Pierre Robin

Hi, I am Xander and I’m ten years old and in    the fifth grade. I was born with Pierre            Robin  Syndrome. I have undergone many                         procedures, thirteen to date to help with  my airway issues that arise when one has        Pierre Robin syndrome. I have also had         years  of  speech therapy. I believe that          although I was born different I am capable of doing amazing things! I never give up       and am determined to do something to       make a difference to other children like me and show that anything is possible if you       just believe in  yourself. That’s why I want    to do this Everest Challenge proving I am    able too,  all while  raising awareness and     funds for Pierre Robin.

Trekking in the Himalayas to the Everest          base camp or the nearby spot called                     Kalapatther is the ultimate challenge that       one can undertake. It is a test of of human       endurance, determination and sheer              physical strength. It also takes an open         mind to be willing to throw oneself into the       wilderness where you must go through the most dangerous airport in the world.  Many people do it for fun, some do it for ego.        Many don’t  make it to their destination       and few die in their pursuit. This journey is 80.77 miles, takes 14 days of walking and   has an  elevation change from 8,500ft to     18,250ft.

Pierre Robin Syndrome is considered a rare   disorder; it is a condition in which an infant    has a smaller than normal jaw, a tongue        that falls back in the throat, cleft pallet, and              difficulty breathing. It requires surgical             procedures to open up the airway like jaw     distraction or tracheostomy. For me it                required tongue lip adhesion, removal of          tonsils and adenoids, reconstruction of my      soft pallet, tongue reduction, multiple                surgeries for ear tubes and major facial             surgery to expand my upper jaw and face    and increase my ability to breathe                    correctly. I have also had to use both               oxygen and CPAP until these procedures   were done.

I am very thankful for the doctors and                medical staff and state of the art facility        that helped me correct my anatomical              anomaly, now I can live and function like       any other child my age. I was also fortunate that I had a caring family who could                   provide for me during this time. However    not everyone is as fortunate as I am. There are many families struggling financially and        logistically, there is not a lot of information about Pierre Robin Syndrome and it can be a scary situation for families to go through.

I thus want to take up this challenge to          raise  money to help other children with      Pierre  Robin Syndrome. I want to create awareness of this rare syndrome and at the same time want to create a fund for                 families that are less fortunate and need     assistance. This fund will help families of     PR syndrome to get to appointments, help with their stay during hospital visits, and    home care or medication assistance that     they may need. This will be based with          Primary Children’s Medical Center with the Department of  ENT.  Some of the money will be used for the Everest Challenge and  the rest will go to  this fund. 

Please join me in this project where we all
humans could come together and take up     the challenge to help each other. Thank you for helping me to help others.