- 2-year-old Tia Price has had butterfly skin disease since she was born, making her mother not dare to hug her for fear she would be in pain.
This disease has the medical name epidermolysis bullosa, also known as butterfly skin syndrome. People with this disease often have skin as delicate as a butterfly’s wings. If touched, it will be very painful and blister like a severe burn.
Baby Tia was born with butterfly skin syndrome, which made her mother unable to hug her normally
Tia’s mother, 22-year-old Annearie, said that right from the moment Tia was born, she was not able to hug her child like other mothers, which made her very sad: “Even though I only met her a little after giving birth, I I could also see that she had no skin on her legs or palms. I was very scared.”
Just touching the skin lightly or when Ray is exposed to sunlight causes the baby’s skin to blister like a burn and causes extreme pain.
Every day, if Ms. Annearie wants to help baby Tia with her personal activities, she must carefully choose places that cause the least pain for her.
“Every day, every time I touch her, I have to be extremely careful. If she picked Tia up by hand, she would feel pain as if her body were being torn apart. She often likes to sit on my knee even though she can’t cuddle, but this also makes mother and child feel extremely happy.”
“Every morning it is necessary to change Tia’s clothes, check her limbs and bandage her. Every time she cries and begs me to stop. Even though it hurts, I can’t stop. I need to change her dirty bandage. I could only apologize to her after wrapping her in bandages and could only tell her that I did it because I loved her very much.”
Every time your baby’s skin is exposed to sunlight, it will blister as if it was seriously burned
If Tia’s skin is accidentally exposed to sunlight, it will crack or blister. Each time, Miss Anne would have to prick the blisters to flatten them. Tia will be in a lot of pain, but if she doesn’t do that, the blister will get bigger and she will be in even more pain. There were times when her mother had to inject anesthesia because Tia was in too much pain.
Furthermore, when she was born, Tia also had a condition in which her intestines were outside her abdominal skin, requiring immediate surgery and having to live in a glass cage breathing with an oxygen machine.
Even though little Tia feels pain every day, her mother always tries to help her have a normal life like other children. Annie also tries to take Tia to other children’s houses so they can play together. .