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.
- Linda Orchard
- Matt Callahan
- Terrie Trenary