Dear Freshly Pressed,
I am addicted to checking for new posts. They are random, inspiring, and sometimes dreadful. In all, a variety that’s as addicting as a Soap Opera or Pretty Little Liars. There is however one blog I think you need to seriously consider in your quest for amazingness. When I was pregnant with my son, I stumbled upon an amazing group of women. They come from every nationality and every walk of life. This group started off with basic pregnancy worries, but has become a support group for a little boy named George.
George was diagnosed with Wiskott–Aldrich syndrome. (WAS) is an autoimmune disorder that causes bruising and bleeding over minor injuries. When they get sick it can quickly become life threatening and the chances of catching Lymphoma are high. This little boy has just reached a year old and is already looking for a life with blood transfusions and sickness.
His mother and father have spent more days in the hospital than out with this wonderful little boy. The youngest baby in our pregnancy group, we have all laughed and cried with his family as they struggled to understand what was happening to their little boy and how to help him fight for his life. His mother organized coloring contests for the children at the hospital and even in their time at home, they have sent care packages to other families in the group. They keep smiling photos coming and all of us cheer when she announces they can go home.
The sense of helplessness to give them hope and comfort remain at times. The best I can do is draw attention to it. There are diseases like autism, diabetes and cancer that have famous representatives to support them. WAS is not well-known. It’s research for help is not as widely known or contributed to. My dear friend deserves better for herself, her husband and that beautiful little boy.
This post came from my friend’s blog and breaks my heart. Please click on the title to see her blog. It is the worst fear of all mothers.
“So here I am, compiling a list of questions to ask George’s consultants on Wednesday about his upcoming transplant but there is only one question I can’t shake but feel terrible for thinking it.
What if he dies?
As a mother there is no worse thought than coming home to a house full of his toys, clothes, teddies, bottles but with no baby. No George.
A life without George is one I can’t imagine, a hell. A world with no smiles or giggles. I can imagine however the pain I would feel, the heart break when I see a piece of paper I’ve scribbled his name on or the steam on the shower uncovers an ‘I heart George’ I drew on the the glass once.
The smell on his teddies that I would one day no longer be able to smell him on. His clothes piled in a corner.
What parent deserves the heartache like this? Heartache some parents do have to feel. What do these people do to deserve this? Why us? Why them?
We travel tomorrow and I know I am going to want to break down every time I even think about the pain and suffering George is going to have to go through to battle this but I can’t. I need to keep it together for George. He’s here now and that’s all that matters.
I love him. He needs me. I need him.
I will update on what the doctors say probably Thursday, and write everything we have been told.
Wish us luck.”
In my own research I have found several sites that support WAS financially or by bone marrow donation. Please click on the links below to find more information.