In honor of EB awareness week, I would like to share Baby Easton with you.
Easton is such a beautiful little boy. He has been through so much in such a short amount a time. He has endured more pain than the average person, and yet he can open his eyes and can still Give his mom a smile. What a sweet boy
Here is Eastons story-Wrote by his family
( Taken from http://www.facebook.com/SupportBabyEastonFriedel )
Baby Easton was born August 23rd, 2012 at Auburn Memorial Hospital and immediately his parents knew something was wrong. 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 antibiotics 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 morphine The drs are talking about moving him from NY to Cincinnati Children's hospital. He is the worst case they have ever seen.
Easton has three older brothers, Logan, Carter, and Blake, and has two loving parents, Jared and Danielle. One cannot even begin to imagine what the parents must be going through. The shock of his diagnosis; the uncertainty of what his future holds; the heart wrenching pain and feeling of helplessness at seeing their newborn baby hurting and not being able to hold him, nurse him, comfort him, or take away his pain.
Easton's father works in a factory and doesn't make much over minimum wage. The factory he works at will be closing within a year and he will be without work unless he transfers with the company across the country from NY to OK. He is taking a week or two off to help his wife as they transition home and learn to care for baby Easton and their 3 other boys. His mom will not be able to work and her days will be dedicated to loving Easton and his 3 brothers, and the arduous and extensive care Easton's illness will require.
His parents need to concentrate on caring for their fragile baby. I pray we can help relieve some of this financial burden so their sweet boy can have the medical supplies he needs to help ease that pain and try to keep his blistering under control, healing, and uninfected as much as possible.
Easton has EB Simplex Dowling Meara
Information From DEBRA website (www.DebRA.org):
EBS-DM is a generalized form of EB simplex. This type of EB is probably the most severe form of EB Simplex.
Infants are often born with widespread grouping of blisters on the face, trunk and limbs. Blisters on hands and feet often eventually cause confluent keratoderma (thickening of the skin). In many cases these calluses form complete thickening of the palms and soles. If the thickening is severe enough it may limit the range of motion of a joint. In such cases, consultation from a surgeon may be necessary to determine the best course of treatment.
Heat may exacerbate blistering. Milia (tiny cysts on skin) may be present after blisters have healed. Nail thickening and discoloration is a common feature.
Blistering in Dowling Meara EBS can involve organs including the oral cavity, gastrointestinal tract and rarely, the upper respiratory tree.
Electron microscopy shows clumps of keratin filaments, which are not seen in other forms of EB simplex.
Mutations are usually in the genes encoding K5 or K14.
Since EBS-DM is the most severe form of EBS, the widespread blistering may lead to death in infancy. However, blistering tends to become smaller and less problematic for most patients as they grow older.
Since EB varies in severity these manifestations may or may not be experienced by the individual affected.