Last night I was sound asleep in my nice warm bed, when I heard a familiar voice calling out to me saying, “Mom can you come here a minute?” I wasn’t exactly jumping for joy that my son woke me from a good sleep since that is something I don’t often get to do but he is my child (even if he is 21 years old) and I have always told him if he ever wants or needs me even if I am sleeping that he can either call me or wake me up.

I came out the room and he apologized for waking me but he had just read something that really got to him and knowing how Simon and I have been covering stories about missing, abused and murdered children, he thought this would be something I might be interested in reading.

My son had emailed me the link to a blog written by a young mother who has totally committed her life 24/7 to her child who is now 2 ½ years old. Sadly the little boy who she has named Tripp, might not even make it to his 3rd birthday.

To Tripp’s mother, Courtney, though, the fact that he has lived this long is a miracle and unlike some other mothers, she thanks God for every day her son lives even if it is harder for her than most other mothers.

Tripp was born on May 14th, 2009. At 7 lbs and 9 oz he was a beautiful baby boy. He was born with a huge blister on his head and his fingernails were unusually long and a bit deformed but to Courtney she didn’t see anything but a beautiful and perfect baby boy and she loved him.

As she waited for them to bring her son to her, a pediatrician came into the room to talk to her about her newborn child. He told her that they were 99% sure that the baby had a skin disease that they call “Epidermolysis Bullosa. Unfortunately Courtney had no idea what that meant or how serious it was. The doctors didn’t give her much information about it at that time either.

The disease, called “EB” for short is a rare genetic skin disease. Any type of fiction on Tripp’s skin or mucous membranes causes blisters. The one thing doctors did tell Courtney is that he would not live to be a year old, but apparently God has other ideas for this amazing child. His mother says he is a fighter and he never seems to give up. She says he is the strongest person she knows. She says he wakes up every morning with a smile on his face. She looks at this as every day that she has to spend with him as a blessing.

Courtney lives with her parents in Pontchatoula Louisiana right now. She and her husband are now divorced and she has sole custody of Tripp. Her mother is there devoting her time to help her daughter with the care of Tripp 24/7 as well. Courtney calls her Mom her HERO!

They have no idea how much longer little Tripp will be on this earth with them, so they cherish each moment of the day that they have with him. The one thing Courtney has is her faith in God. She quoted this verse from the bible on her blog:

“He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the former things have passed away.”
-Revelation 21:4

She sits and talks to her son, she tells him how much she loves him, she tells him when he is in Heaven he will not have any more pain and that he will be able to run, talk and play like all the other little boys do. She tells him that once he is gone that there won’t be a day that goes by that she won’t miss him and about all the people that love him. She gives credit to her son for making her a better person and how she promises to be the very best she can so she will go to Heaven when she dies so they can be together again.

This is so hard. It is so sad. The end of this month will make 30 years since my twins were born. As most people that read my articles know I lost my twin boys. I can honestly say that having to bury two of my own children was the hardest thing I have ever done in my life. I didn’t have the joy of waking in the middle of the night to feed them or changing their diapers or playing with them or even the chance to watch them grow. I never got the chance to watch them take their first steps or to hear them say their first words. I never had all that but my heart aches for my two sons nevertheless. I carried them for 6 and a half months, I was their mother and a Mother’s love never dies.

This is why I have spent the last 3 ½ years writing about missing, abused or murdered children. This is another reason stories like this get to me. Here is a mother truly trying to hang on to every moment she can with her son, knowing that any day could be the last. Her love for her son is felt with every word she types on her blog and they are so strong. It is a blog well worth reading. She has pictures posted of Tripp from birth and as he has grown. He was a gorgeous child and even now, if you can look beyond the horrible blisters, you can still see a beautiful child.

As a mother I can say I can feel her love for her child. Courtney is a hero in my eyes. She asks for nothing in return. She is there for her son now and will be til the end. Even after he has gone, she will still be there for him. A piece of her heart will go with him.

I had never heard of this disease until now. Courtney’s website gives a lot of information about the disease and it is helpful for anyone who has a child born with EB helping them learn how to care for the child. I read it, and after looking at all the photos I couldn’t help but cry. I am very sensitive about children but this particular blog is so sad but it is something everyone should be made aware of in case you ever are faced with this problem. I know it takes a special person to stick with the care of a child with any disease or health problem but this is one that I think would take a strong one to handle.

Please pray for little Tripp and his mother, Courtney. I pray that a miracle will happen and before his time to go comes, they will come up with a cure for EB and it will save his life. If that is not in God’s plan then I pray God will make his life less painful for him in the end. I would love to be able to hug this precious child. Please God watch over this baby, as I know (even though the reason is not known) that there is a plan for him. Please God give Courtney the strength to go on caring for her son. She is pretty amazing herself.

Jan Barrett