I’ve not had the privilege of meeting Connor – a 5 year old boy who has a disease called X-linked hyper IGM. It literally affects about one in a million. I know good friends that know Connor and his family. And when I heard about Connor’s story, I was moved to tears – I’m a father and if I’m honest, losing a child is the unfathomable pain.
Connor’s family is not asking for your money or sympathies. They’re simply asking for you to get your bone marrow typed and join a bone marrow registry. This is especially critical for those who are people of color simply because there are so few minority bone marrow registrants.
I’m asking for couple more things:
- Check out their website.
- Please watch their 1 minute video below. (click here if you’re reading this via RSS)
- Lift a prayer for Connor and his family. And when there are those around you in similar situations, do something.
Here’s a fuller perspective of Connor’s story and 5 practical things you can do to help?
Our precious son is in the fight of his life and he doesn’t even know it – he is only 5 years old. All he knows is that he cannot go to school, that he cannot swim, that he needs to go to the hospital and get “poked” every month, and that he needs to take his “yucky” medicine 4 times a week.
When Connor was first born, we were so happy and grateful that we were blessed with the most beautiful and healthy baby boy (7 pounds, 14 ounces, 21 inches and an apgar score of 9 out of 10). We were the luckiest people on earth. He fulfilled all my wishes and dreams of being a mother. He was good-natured, ate well, slept well and was such a happy baby. His smiles lit up the room and my heart. Connor brings so much laughter and joy to our lives that we can’t even remember what our lives were like without him.
Connor has endured more medical procedures than most people I know. At just 2 years of age he underwent surgery to remove his adenoids and insert tubes in his ears. Recently, he had to have a bone marrow biopsy, colonoscopy, endoscopy, gastrointestinal testing, biopsies and chest x-rays. He suffered through at least 30 ear infections up to this point, bleeding from his ears, 105 degree fevers, numerous E.R. visits, over 50 anitbiotics, and hospitalization for an infection that required IV antibiotics and isolation for 4 days.
The pediatricians kept reassuring us that this was “normal” and that the tubes should fix things. When the tubes failed within the first 2 weeks, we were referred to a pediatrician specializing in infectious diseases and an immunologist. After numerous lab tests, we were told that his body does not make IgG (a type of antibody, that is used as a defense against viruses and bacteria). He has been on IVIG treatment ever since, where we go into the hospital every 3 or 4 weeks, and he gets an IV infusion of IgG for 4-5 hours. As a result, his health has dramatically improved.
In May 2009, the doctors at Cincinnati Children’s Hospital diagnosed him with X-linked Hyper IgM syndrome. It came as a complete shock! This disease affects mostly boys and is so rare that there are less than 300 people living with this disease. The median age of someone with this disease is 25 years old.
THE ONLY DEFINITIVE CURE IS A BONE MARROW TRANSPLANT. The biggest risk factors are contracting an infection that his body can’t fight, mainly pneumonia, or this disease turning into some sort of malignancy in his liver, pancreas or gastro-intestinal system. The long-term prognosis for Connor’s condition if left untreated is an unbearable thought.
Our only hope for Connor is a successful bone marrow transplant. Please help us and others like Connor by registering to become a bone marrow donor. It is the only hope that we have for our son. We are desperately pleading for more donors so that our baby can live a long and prosperous life.