Writing is my way of getting through this.
It is something that I need to do to stay sane. Thank you for reading and helping me get through this and fighting for hope for other families going through what we are.
Yesterday my husband and I found out that we carry a horrible mutated gene that we passed along to our son. Our kids have a 1 in 4 chance of getting this disease.
Max was a normal boy at birth. Learned to sit and roll over. He babbled and had the best smile... the most smiley baby I've ever seen. But suddenly he lost the ability to sit at about 8 months. ..lost the ability to hold his head... to stay smiling. He became more irritable and something was wrong.
After a hospital stay and numerous tests we've found that he has Krabbe Disease. A horrific disease that if not caught at birth is basically a death sentence. Only 2 states even test for this genetic disorder at birth. If a child is born with it and it is caught in a newborn screening they may have a chance for treatment. .. for a full life. I've found that the life span is 2-7 years. .. Max is 10 months on Saturday.
He will lose motor functions and potentially lose his sight, hearing and the ability to eat.
So many thoughts have raced through my head. Why us? Why him? Did I do something wrong? Could I have done something better? How can I help him? How can I survive each day? How do I support my husband? How do I support my 2 and 1/2 year old daughter? Is there hope?
I have to think there is some glimmer of hope or I have nothing. I truly believe everything happens for a reason. That spirit chooses a family. Emma and Max are my world. My bright light. .. my everything. They chose me to be their mother and I owe them the best possible life I can give them.
At first I felt sorry for myself. For Emma... for my husband. .. for Max who has to suffer through this. Now I have been taking it a day at a time. I can't change what is but I can change my outlook and love my kids and husband as much as I can. I can help in the fight to get this disease taught to more doctors and fight for the testing to be done in every state. I can show Max the world while he can see it and enjoy the simple things in life that I've missed.
We are undergoing some more tests and things to make this little man as comfortable as possible. We're also planning to reach out to the other families going through this for support.
Keep us in your prayers and good thoughts and help send positivity our way. I'm letting my love radiate to my family and others. HOPE AND LOVE are getting me through each day.