My name is Brandon, I am the loving and dedicated father to an amazing 12 year old kid named Alex. He is fighting an extremely rare and deadly genetic auto-immune disease known as IPEX Syndrome. There are fewer than 500 documented cases of IPEX Syndrome world-wide.
As a father I would do anything for Alex....but the one thing I want more than anything is for him to grow up to enjoy and celebrate his own life. But for him to live I need that special someone who will give him the Gift of Life. He needs a bone marrow donor. Please register, swab and donate to save Alex or one of the thousands of other patients waiting for their gift.
We live near St. Louis (Missouri). Alex loves school and is an outstanding student. He is currently in the 6th grade. His favorite subjects are math and science. He wants to grow up to be an inventor or engineer. Our hope is that Alex gets the chance to grow up to be anything he wants. To simply have the chance to grow up and celebrate life.
He loves animals. Due to his disease he currently can't have a pet. So, he calls his stuffed animals his "pets". You will usually find a few of his stuffed animals curled up with him when he goes to bed or when he is not feeling well.
Alex has been on the list waiting for a life-saving bone marrow donor since December of 2016. He knows that without a donor his chances of surviving more than a few more years are not very good. Alex very rarely complains about the many doctor visits, daily medication, weekly infusions, frequent lab and blood tests and the many steps we must take to keep him healthy. He deals with the constant pain his disease causes and the uncertainty of his future.
Alex faces all of the challenges of his disease with an undeniable spirit and courage that most people can not imagine. Alex loves Superheroes. His favorite is Iron Man because he has a suit of iron that protects him from evil. We all waith for the day that Alex finds a donor and the world will have a new superhero!
