Shamila Jayne “Baby Zhamie” Alolon is a pretty and happy little that you can’t help but be enamored by her sweet smile. With her cheery attitude and her sweet smile, you would wonder how she could manage to be that bright and cheerful despite the excruciating pain she experiences every day from wounds all over her body.
Baby Zhamie is not an ordinary girl. As much as a butterfly is pretty yet gentle, Baby Zhamie has a heart of a warrior. She is very much stronger than she appears.
She was born on July 15, 2013, with a rare genetic and very serious skin disorder called dystrophic epidermolysis bullosa (EB). While she was a bundle of joy when she was born, her parents’ world fell out from under their feet when they learned that their precious little one was going to live a painful, short life and probably be disfigured.
Epidermolysis bullosa refers to a group of genetic skin disorders with one fundamental symptom: extremely fragile skin that blisters or tears from trauma. Caused by mutations in the collagen VII gene, EB blocks the body’s natural production of the collagen protein. Protein is like glue that connects the layers of our skin, the dermis and epidermis. Without this protein, the skin becomes very fragile and easily breaks or tears with just minor friction or trauma.
Children afflicted with this disorder are called “butterfly children” because of their very fragile skin. Their skin is very sensitive and fragile that their body or limbs need to be wrapped with special gauzes for protection. EB is unfortunately incurable and patients with this disorder need lifetime daily wound care management, possible reconstructive surgery for fused fingers and toes, and other treatment needed for the complications that accompany this condition.
Our gentle butterfly Baby Zhamie has blisters all over her body, arms and legs that need to be wrapped with specialty bandages. These need to be changed every day – a process that is incredibly painful. And if the sores are not uncomfortable enough, they also itch uncontrollably, prompting her to scratch at them and traumatize her skin even further.
While Aiza, Baby Zhamie’s mother, stays home to take care of Zhamie and her younger son full-time, her husband is a construction worker. Obviously, relying on one income for a family of four plus a child with special needs is never enough. Baby Zhamie’s wound care needs alone cost a lot and surely this has a negative impact on their finances.
The following are the list of things Baby Zhamie needs:
*Johnson’s baby bath
*Any surgical tapes
For intake meds and vitamins
The family needs assistance to sustain Baby Zhamie’s daily wound care and special nutritional needs. Any amount you share will help the family cover medical expenses incurred as well as assist with day-to-day expenses.
You can share either in kind in the form of supplies stated above or financial assistance to:
Aiza B. Alolon
Bago City Neg.Occ,6101