Update on my nephew Bradley: Prayers needed!!

DaysLady

DaysLady

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Many of you may recall my nephew Bradley and his battle with EoE, a disease of the esophagus. He is unable to eat food by mouth and has a feeding tube. He has good days and bad.

Good Day = because of his body's reactions to food, water (even bath water) can be painful. Ocean water, with all it's salt, was even worse. He would sit on the beach and sadly watch as his siblings played in the waves and would never dare go in because it's hurts so bad.

This brings me to the good day. His feeding tube has allowed his body to heal. Water is no longer painful. He dared to try it, and spent an entire hour playing int he ocean. His smile didn't fade for a while. He even played in the lake with me this summer and we had a water gun fight. He even begged "Stay in the water Aunt Steph!!!" My heart is full when he is so happy and is able to play.

Bad Day = we have had a few bad days recently. My sister in law, his mama, caught him stealing food in the middle of the night and eating it in his room. This is terrifying. Food can kill him!!! So she took it away and warned him of the dangers and was being stern with him, and he just cried and cried. He said "mama, I'm so hungry, please let me eat. Please, I just want to put something in my mouth that I can taste, please mama, please let me eat." He is depressed, heartbroken all over again because he cannot eat food. (granted, there are 2-3 things he can eat by mouth, but it's been 2 years. He's grown tired of sweet potato.)

And on top of that, the insurance company wants to take away coverage of his feedings for his feeding tube and supplies. It seems every year they try to take it away, it is very expensive. If the insurance company succeeds, Bradley could face starvation, or worse, he could try to steal food again. Food can cause a reaction that could suffocate him.

My heart is broken. I've cried 3 times so I have no idea how my sister in law holds it together so well. I just want to feed my nephew, I want more than anything for him to get that bite that tastes so good.

Pray for my nephew's depression to go away, pray for his heart and strength, and pray for my sister in law. She only holds it together in front of us. But I know her heart is breaking behind closed doors.

And do us all a favor. At your next meal, slow down, close your eyes, and truly enjoy every tasteful bite of your food. Never take one single bite for granted.
 
Goodness, what a heartbreaking situation. I hate that insurance companies don't want to pay for special foods/formulas because of the expense, and families are left wondering what will happen and how they will pay for things if the insurance stops. It's just wrong!

Prayers for everyone involved.
 
I can't believe what I'm about to tell you. Exactly 1 hour after I posted this asking for prayers, the insurance company called my brother in law to tell him that my nephew's food and feeding tube supplies will not only be covered, but more has been shipped and will arrive tomorrow!!!!

One prayer answered. Still need prayers for my nephew's depression. It comes and goes, so just pray for it to subside. Pray for my sister in law and brother in law to be able to control the food, and not let him have any. I know this is hard on them too. So we appreciate those prayers, just keep them coming.

Never take one single bite for granted. Along with children all over the world starving from lack of food, there are kids like Bradley with food at his fingertips that he's not allowed to touch.
 
Oh how tragic. Really is making me tear up. I'm so glad the insurance company will keep doing what they should be doing. Prayers for you, Bradley, and all of his loved ones. You're all so brave and strong for going through this.
 
Thank you JS, I think he does see a therapist I'll have to ask my sister in law. If he is not, hopefully she can find one she can afford or that insurance will help with. That's the key issue with Bradley's needs. Insurance is so difficult.

People wonder why suicide rates are so high. :( I pray I never have to type that prayer post in this forum. I pray Bradley can find it in him to love himself and accept his feeding tube life. He does have good days, where he is in good spirits. But these low times are really low. His mom, and I as his Aunt, and his Nana (my mother in law), we would give anything to "kiss the boo boo away". Sometimes we just cry with him. He just wants to eat, and I can't blame him. He's a tough little boy. Just keep those prayers coming for my B-rad!
 
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