Baby Amir, Diagnosed with Epidermolysis Bullosa

Hi everyone,

My name is Erin Sparkuhl and I am fundraising for my Nephew, baby Amir, and his family to help fund Amir's medical care. Amir was born 7 weeks early on December 1, 2022 with missing skin on parts of his body. Soon after he was born, he was diagnosed with an extremely rare genetic disorder called Epidermolysis bullosa ("EB"). This is a debilitating, horribly painful disease some have described as "the worst disease you've never heard of."

Kids with EB lack critical proteins that bind the skin's layers together. Without these proteins, the skin tears apart, blisters, and shears off from even the slightest friction. This results in large, open sores, severe pain, and disfigurement from the missing skin that Amir will live with for the rest of his life. Kids with EB are often called "butterfly children" because their skin is as fragile as a butterfly's wings. There are no treatments or cures for EB, although research is ongoing and we are vigorously searcing for possibilities. To learn more about what life is like for kids with EB, go to: https://www.ebresearch.org/life-with-eb.html The suffering those with EB deal with is almost incomprehensible.

Amir will require dedicated 24/7 care. His wounds will be constant and need to be expertly bandaged and cared for daily. Each time his bandages are changed, it must be done very slowly and carefully and takes 3 hours from start to finish. The pain he will live with, especially during these dressing changes, is like having severe burns. His mobility is affected and he will require bandages and dressings all over his body every day of his life.

Thankfully, Amir was just released from the hospital after a month in the NICU, but medical insurance does not cover the cost of his home care or specialist visits. Both of his parents, Pamela and Mostafa, have to work full time to make ends meet. Pamela works at a grocery store and Mostafa is a janitor. But because of Amir's needs, Pamela cannot return to work. They also have two other kids to take care of, Aris (9) and Lylee (1). Unfortunately, there are no grandparents to help - Pamela's parents both passed and Mostafa's parents live out of the country and can't travel.

I am asking family, friends, and even strangers, to please join me in supporting baby Amir and his family in their time of need. It is our greatest hope that one day research will help Amir live a normal, pain-free life and we will continue our journey to find a cure for Amir. Until then, the best we can do is make it possible for Amir to continue his medical treatments, see specialists who focus on EB, and have loving care at home with his Mom.

Any amount helps - no amount is too small. Even if you cannot donate, please share and post a comment of hope or prayer below.