Through a friend on Facebook, I heard about Easton Friedel. This boy was born two months ago and has known more pain and suffering than most of us will ever experience. He was born with a rare condition known as Epidermolysis Bullosa (EB). Have you heard of it? I surely didn’t know a thing about it. But one look at his picture scared it to my memory.
His story makes me especially thankful to be living in France. The parents of Easton not only have to worry about their son, but also how to pay for the expensive treatments. They live in the US. Bandages alone cost upwards of $4,000/month! So while dealing with this heartbreaking, painful situation, they have to worry about fundraisers and trying to stay afloat. I can’t imagine what they’re going through, what parents like them must go through each day. It’s not perfect in France, but things like this remind me it could be worse.
The struggles of this family touched me, maybe more so since I’m pregnant right now. If our child is born with a condition like this, I wouldn’t be able to cope with the stress of bills. All I would want is my angel better. Give me 50% taxes if it means I would never have to go through what this family must endure while their child fights for his life.
Below is the story of Easton Friedel, quoted from his Facebook page. It’s extremely sad, so if you have a weak heart you may want to skip it. Please send your prayers to this strong little boy and his family, and lets hope that he has a quick recovery. There is no cure for this disease, only periods of relief.
He was missing skin on most of his limbs, covered in scary, deep red, open wounds. He came out screaming violently, his weak five-pound, fifteen-ounce body shaking because of the unbearable pain. Auburn Memorial hospital had never seen a case like this so he was transferred to Crouse, where the doctor had only seen 2 in his entire career. Baby Easton was unable to even take a pacifier for comfort because the friction of it against his skin left his lips blistered immediately…so they had to put in a feeding tube and his mom will have to pump instead of nursing him. His pain was eventually controlled with a combination of morphine and Tylenol, and he is on antiobiotics to try and prevent infection from his many open wounds. He is getting new blisters from being cleaned after he goes potty…and needs to be medicated to tolerate the pain of cleaning him up. Changing his bandages is also extremely painful and calls for more morephine. The drs are talking about moving him from NY to Cinncinati Children’s hospital. He is the worst case they have ever seen.
He was quickly diagnosed with a severe form of Epidermolysis Bullosa (EB). EB is a rare genetic skin disease (affecting only 1 out of 50,000 births). In this condition, there is a defect in the connective tissue of the skin and mucous membranes that causes the skin to be so fragile that the slightest friction, minor injury, heat, rubbing, or scratching causes severe blistering —inside (such as the mouth, stomach, esophagus) and outside the body. These blisters can cause serious, sometimes fatal problems, when they become infected. The systemic and repetitive nature of the blistering leads to blindness, swallowing and breathing difficulties, scarring, infection, disfigurement, disability and dehydration. Ultimately, such devastating effects can produce a high rate of mortality. In fact, 87% of babies born with one of the more severe forms of EB do not live more than 12 months. There is NO cure for this horrific disease. Sufferers of EB have compared the sores with third-degree burns. They live in unthinkable pain.
With skin as fragile as butterfly wings, EB patients are dubbed “Butterfly Children.” On the outside, physical wounds and limitations brought on by this disorder prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease.
Sorry for such a sad post tonight. I’m going to go snuggle with my daughter now… French Mamma’s emotional tonight.