Family Website: http://inwesleysworld.blogspot.com/
Recently a friend of mine had a baby and called to share the good news. A healthy baby was reported and the excitement in his voice was clear. Here was a first time father finally getting to experience the most wonderful blessing in life, and I was so happy for his family. Then a boast of ten fingers and ten toes stopped me dead in my tracks. What a natural thing to say. After all, isn’t that what all parents do first? Count fingers and toes to assure perfection and good health? He didn’t realize he was talking to a parent who did that same count and came up short.
Our son, Wesley, was born March 14, 2003. He was full term and weighed 4 pounds 14ozs. Later, a doctor came in and said he was going to look Wesley over and tell me all the things he saw that concerned him. I agreed and he began rattling off the list - small for gestational age, two-vessel umbilical cord at birth, small head and eyes, missing ear canals on both sides, hypoplastic thumbs (missing a bone and nail), one kidney and bilateral hip dysplasia. He looked at me with a worried expression and wondered what my reaction would be to hearing news that my baby wasn’t “perfect”. I asked, “That’s it?” He nodded and said that’s all he could see for now. I took a deep breath and said, “Okay.” He commented that I seemed to be taking the news well. I said, “So far what you’ve told me is that he’s a little guy who has some funky ears, funky thumbs, and a funky kidney. I can learn sign language, work with the thumb issue and plenty of people live with only one kidney.” I told him I realized there were children in that very hospital fighting for their lives and what I was dealing with was nothing in comparison. I was ready for the challenges Wesley had. Little did I know at the time that the day would come when we would be that family in the hospital with a child fighting for his life.
Later Wesley was fitted with a bone conduction hearing aid, required a PDA ligation, which is a repair of a heart defect and an orchidopexy for an undecended testicle. After seeing countless doctors and being told many times that they were unsure of a diagnosis, a routine hand doctor’s visit in Boston changed our lives forever. Just by looking at Wesley, he knew his fate. At the age of one, Wesley was diagnosed with Fanconi Anemia.
Wesley is now 7 years old and he's doing wonderfully. He is pre-transplant and considered to be in mild bone marrow failure. He has blood work done every three months to check his counts and a yearly bone marrow biopsy to detect signs of leukemia or chromosomal changes that might signify leukemia is coming. We have two other beautiful children, Collin who is 14 and Quinn who is 8. Wesley has been an incredible gift to our family and wins the hearts of all that meet him. He is my inspiration, my teacher, and my soul.
Please help us raise research money for this awful illness. It has taken too many lives before their time. We need a cure, and you can help.
