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6yr old needs treatment for heart & blistering EB

My son had a 15% chance in the womb. It was the most heartbreaking thing I've ever experienced for the comfort team at the hospital to come to my room after fighting for five months, living in the heart and vascular institute, taking heart meds to get them thru my body to his. I didn't care if it damaged my heart as long as his was better and the third line medicine the drs had no hope for working, turned it around. The fluid around his scalp, limbs, EVERY organ and genitals slowly went away. It was truly a miracle and he was born three days later. Immediately there were problems with his heart going into svt and I couldn't even see him for hours til he was stablized.. For those of u that don't know, fluid forms around organs when the heart does not pump enough blood to them and the liquid developed is called hydrops. Eventually causing so much pressure they stop working or the heart would have no room to pump from the pressure. In the medical center watching my baby hooked up to all those tubes for a month in the hospital was the worst 6 weeks of my life. He is doing better but he's gonna possibly need a heart surgery that as a family of 7, we just can afford. He also is a child that is affectionately called a butterfly child. He has epidermolysis bullosa which is a blistering skin condition. and any friction, even the flutter of a butterfly wing can cause huge painful blistering. But mainly they are called butterfly children because their skin is as fragile as a butterfly's wing. Alot of the time I carry my 6 year old because his feet hurt so badly he can't walk. If we don't carefully drain the blisters they get HUGE and can encompass his whole foot. That itself is painful as well. He currently cannot wear shoes except water shoes sometimes and they still give him PAINFUL blisters. only certain clothes (which still give him blisters on his back some days), and he gets the blisters on his fingers, private areas, etc. It's hard to keep up with all the medicine for his blisters so they do not get infected cause that is a huge ordeal in the EB community. The impending surgery he may have now that he's old enough, is hanging over me and I know it's coming. And straight outta pocket. Especially after our losses from the covid situation.. I'm at a loss and hate to even ask. I have the collection amount so high cause of the meds, the at home care and bandages (he can only use certain ones without adhesives), the numerous cardiologist visits for EKG and echocardiograms, and the potential heart surgery where they will go up his leg and correct the electrical circuit in his heart. The goal is probably not even enough to cover the surgery but some help with it would help ALOT. If anyone caN help even with a dollar, I can't even begin to describe the gratitude from our family. I just want his life easier and healthier. Please if u find it in ur heart to donate, it will be such a blessing to my little butterfly child. He's got is rough inside and out. He's such a loving and sweet soul too. He's my lil soldier and muscles thru it. I hold him while he cries from the pain and try not to let him see I'm crying right along with him. He asks why he can't have normal skin and a normal heart like the other kids. It kills me. I want to be prepared for the next step. So..I'll leave with this...if u donate God bless u, and if u read this and don't, still God bless u as well. Prayers for safety for everyone! We stay inside anyways in extreme fear of what he already has going on besides covid being out there.. I can't lose my baby boy when God gave him to me with a 15% chance. His name is Jayce which ironically means healer. God bless u all

Organizer

Michelle Boehme
Organizer
Conroe, TX

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