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Help Save Easton- baby battling Epidermolysis Bullosa- EB

Baby Easton, born 8-23-12 with Epidermolysis Bullosa (EB)...severely painful, incurable rare genetic skin disease

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Easton's Story* see updates at bottom

*Click on gallery tab for videos and photos updated almost daily

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 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.
 

The following is what it’s like to be diagnosed with one of the more severe forms of EB:

Imagine…

  • a child with painful wounds similar to burns covering most of his or her body.
  • having to wrap each tiny little infant finger with Vaseline gauze and then cover it with gauze to prevent the hand from scarring, webbing and contracting.
  • never being able to hold your child tight because if you did, their skin would blister or shear off.
  • a child who will never know what it’s like to run, skip or jump, or to play games with other children because even the slightest physical contact will injure his or her skin.
  • a child who screams out each time it is bathed because the water touching its open wounds creates incredible pain.
  • a diet of only liquids or soft foods because blistering and scarring occur in the esophagus.
  • an active baby with his knees soaked in blood from the normal act of crawling.
  • a teenager with stumps for hands, the affected fingers scarred/healed together.
 
 
 
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 uncertainy 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.

Please help us in raising money to help save Easton's life, to make Easton's days on this Earth as painless as possible, to help his parents enjoy the days they have with their baby without the worry of how they will pay for his care and medical supplies.  Please help us raise awareness about EB and help us raise money for DEBRA (http://debra.org/) so they can continue to try and find a cure.  All proceeds raised will go to help pay for Baby Easton's care and medical supplies and to help DEBRA find a cure for this unforgiving disease.

I can not stress this enough. EVERY dollar counts. No donation is too small. Please donate what you can and please forward this to everyone you know, post on Facebook, etc.

And lastly, please pray for Easton and his family. For healing. For comfort and peace, no matter what this journey brings.

WE CAN MAKE A DIFFERENCE in Easton's life. He desperately needs our help.

Thank you will never be enough for the love, support and generosity everybody has shown in coming together to help precious baby Easton. His parents are overwhelmed and beyond grateful...from the bottom of our hearts, thank you for taking this family into your hearts and prayers...God bless!

Monday, August 27, 2012 update- Easton is 4 days old

My heart has never hurt so much for another human being in all of my life. Easton is now on morphine for pain around the clock. How did they know he was in pain- when he stretches or moves he has started shaking and jerking and then crying out in pain. I feel broken for him, broken for his family. I just cant understand why he has to endure the unthinkable, he is a baby and this life of pain is all he knows. Its just so unfair.

His dressing changes are so painful and take TWO hours.  His bowel movements take 30 minutes to clean and no matter how slow or careful they are, leads to new blisters.  His old blisters arent heeling and he gets new blisters daily.  And of course this is when the many open wounds become so dangerous...so easy for that fragile child to get an infection...yesterday he had a fever and was more lethargic/less active, and didnt want to nurse.  His oxygen levels kept dropping, and he had apnea episodes (stopped breathing). He wouldnt settle down and didnt sleep much last night, I am guessing because of the pain he is constantly feeling. His fever spiked to over 100 but is now under control.

They have also moved him into his own private NICU/room for fear of infection. HIs 3 older brothers have not even been able to see him. Danielle is nursing him and pumping so her baby has the best chance at beating any infections.  Danielle and Jared are the strongest people I know right now.  They are literally completely overwhelmed over all the support everybody all over the country has given for their baby boy. They are beyond grateful and can not thank you enough for putting Easton in your heart and prayers. Please, keep sharing his story, keep fighting for this sweet child that is fighting for his life.  Keep praying for his miracle!

For those in Auburn, Channel 9 news interviewed his mother, Danielle, this morning and it will air between 5-6:30 tonight. For those not in the viewing area, I will post a link or get it on youtube somehow. Please God, dont let this baby hurt anymore ... we need a miracle from you now. 

 

UPDATE 8/28/12 photos of Easton (5 days old) and his parents 

http://www.facebook.com/media/set/?set=a.10151040564052874.422405.85333952873&type=1

 

UPDATE 8/29/12 - 6 days old

Sadly, it's not a great day for Easton. Apparently EB babies dont do well on Morphine so they are trying to get him off it...he only gets its twice a day now...which is worrisome considering the pain he must be in.   They think he has the sores/ulcers in his throat/esophagus now, which is causing him pain, making him not want to swallow, and/or have trouble swallowing. So his feedings are not great today. They are looking into alternative ways of feeding him. He is having reflux issues so is now on meds for that. His sats (oxygen levels in the blood) dropped to 70 so they have him on oxygen (should be high 90's). T they tested his oxygen levels through blood sample and the Nurse said, OK but could be better. He's very congested/junky/raspy-sounding. They think he has another infection.The nurse said "they're concerned". They may be starting a PIC line tomorrow, basically an IV, in his head. And they've been discussing other ways of feeding him, like a G tube, but they don't know how they'd anchor it because the skin around his umbilicus is so raw. All in all, really need to be lifted up in prayer....everyone. It was such a tough day for Easton and his family. PLEASE pray for Easton...

 

UPDATE August 30, 2012

Easton is being transferred from Syracuse (Crouse)hospital now via helicopter to Cincinnati Childern's where they specialize in the care of EB! I am sad he is so sick they had to move him but comforted that he will be in the best hands! The doctors there are legends in this field! Easton's 3 older brothers start school Monday, but Danielle and Jared have to go be with Easton...so much going on...PLEASE PRAY, for all involved <3
http://www.cincinnatichildrens.org/service/e/ep...

 4:00 Easton and mommy Danielle are on their way to Cincinnati Children's Hospital via Airvac Helicopter (his daddy is driving down). The flight is NOT covered by insurance. Cost = $15,000.00 !!! Thats just the flight. His bills at Children's will be astronomical. PLEASE continue to share and pray for baby Easton ♥ Thank you will seriously never be enough. I cant say it enough. THANK YOU ALL for loving this sweet baby and sharing in our mission to help this family ♥ 

 midnight:

Update (from Eastons aunt who spoke with Danielle after they arrived in Cinnci).... Danielle sounds good! I think she is more relaxed bc she knows she is in good hands. NO biopsy until Tuesday bc no one is around until then. The GOOD news is that he is going to be seen by an ENT tomorrow to look into his throat and the airway and see whats going on, so tomorrow looks like some answers to find out ...
about the sores. The bad news to that is that the doctor said "if the airway is compromised I will have to sit down with you and Jared to make a decision". I know what that means, but not gonna think about it. He had an xray on his lungs when he got there and they unwrapped him to see what was going on, but no words on anything as far is that is concerned. I think the lungs were good, but they didn't make a comment on his skin. MORE UPDATES TOMORROW  ♥

 UPDATE AUgust 31, 2012

UPDATE FROM Eastons Daddy..."Cincinnati is amazing. Such a relief that a team of SPECIALIST grabbed him with open arms! They are so knowledgeable about Eastons disease (EB). We are filling their head with questions and they are answering them without hesitation. We even caught her saying "When he goes home" :) :) ;)!!! (He saw the ENT) No blisters in his esophagus.!! His throat is swollen from reflux. This is so relieving!"  

He will be seeing a GI specialist later today.  His biopsy probably wont be done until Tuesday, so then another week for the results are in on exact type of EB Easton has.  They couldnt get a pic line in his head so for now he has an IV in his arm for all of his nutrition. Eastons mom, dad, and grandparents are in Cincinnati and they truly can not say enough about the staff and doctors.  Its a wonderful feeling knowing that special boy is now getting the best care from the best EB specialists in the country. :O)

 

UPDATE Sept 3, 2012

Easton has surgery today. He had a PIC line put into his chest (this was necessary bc the IV would not stay in his arms bc of his skin, and it was the only way that sweet boy was getting nutrition or meds bc he wont eat or swallow).  He is getting his biopsy tomorrow so hopefully in week or so the results will be in and we will have an official diagnosis to the exact type of EB he has...then we will know more of what the future holds.  Bless this sweet boy, and all of our family, been through SO much in 11 days. THANK YOU friends, new and old, for coming together and loving this baby like he is your own ♥ XOXOX

 UPDATE on EASTON Sept 4, 2012:

The biopsy is done. Dr. Lucky herself performed it. She would not guess at which type of EB Easton has. Should be about a week before results are in, and then we'll know. After the type comes back, they will do a blood test, and that will narrow down the subtype. There are three types of EB: Simplex (which tends to be the most mild, but can have severe cases), Juncti

onal, and Dystrophic. The last two are the ones known for fatalities, depending on what subtype you have. It seems to us that whatever type he has, it must be the recessive subtype, since Jared and Danielle do not present with EB symptoms at all. We really don't want to hear Junctional Herlitz. 
So today, they're going to bathe Easton, the best you can bathe an EB baby...he doesnt get to have regular baths and get to have that wonderful newborn smell...because with all his open wounds the smell can get rather unpleasant :O( He had a full bandage change...and sadly, all his wounds were bleeding very badly. Danielle and my aunt Jo had to leave the room, they couldnt take it, could not handle watching that precious baby cry in pain. I can not even fathom the horror of watching Easton hurting, just the thought brings tears to my eyes. Dr. Lucky also said they will have to address the issue of him not eating...maybe a G-tube which of course is very difficult to keep lodged on an EB baby so more potential for problems. Today is a sad day, a very hard day...please lift Easton up in prayer, and his family that is struggling to keep strong...their hearts can only take so much of watching this precious child struggle :O( Thank you so much, you will never know how much it means to all of us that you are fighting for Easton along side of us ♥

NEWS VIDEO:

Here is Danielle on the news . Bless her sweet soul. I just want to hug her right now !
http://www.9wsyr.com/mediacenter/local.aspx?videoid=3724621

 http://www.9wsyr.com/news/local/story/Family-friends-rally-for-CNY-baby-born-with-rare/mZBmH7O8SU-pG1oCuyCPjA.cspx

 paper: http://www.syracuse.com/news/index.ssf/2012/09/update_donations_for_baby_with.html

This blog will give you a graffic and honest idea of what Easton and his family will face in the months ahead. This mother is a hero, an inspiration to all EB families as they get ready for the fight of their lives. http://randycourtneytripproth.blogspot.com/

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