The Henshaw Boys' EB Fund
Donation protected
Our boys Nicholas (right) and Elijah (left) were born with a condition called Aplasia Cutis, which means they were born with missing skin.
Everyone was completely blindsided by this, as Aplasia Cutis is not detectable in utero.
A few days after his birth, we learned that along with Aplasia Cutis, Elijah also had a very rare and serious skin condition, called Epidermolysis Bullosa (EB).
Two years later we were blessed with the arrival of Nicholas, who was also born with Aplasia Cutis and EB.
Above photo is Elijah's chest. This was the result of months of hard work to heal his chest. Once it broke open the first time (around 4 months old) it was a constant problem area until he was about 2.5 years old.
Above photo is Nicholas's neck when he was around 4 months old. He would push on his ears and neck so hard that he would rub the areas raw. He still scratches his ears raw, and his mouth is frequently healing from friction from bottles and teething.
Above photo is Elijah's foot. This is a mild example of how dry and itchy their skin is from constant healing. Mom and Dad use an anti-itch cream every day, along with 3 dosages a day for each boy of an oral itch medicine. Even between both of those medicines, they both still itch all the time.
Above photo is Nicholas's foot. This was almost 3 months after he was born, Mom and Dad changed his bandages every single night for 6 months. Now they are able to change them every other day (or as needed for any serious wound). Both boys are disfigured on their feet from the Aplasia Cutis.
Above is a photo of Nicholas's chest. This was the result of a blister that formed under his arm from him being picked up too hard. This wound took over a month to heal over.
https://www.facebook.com/NTDLifeOfficial/videos/355064298338371/?hc_ref=ARTKfRfUE6MotPysbHdNZE3_YFA1hrUqmHEpfhkqxA__11jKsm5pyBrmKCfmAuaDseM&pnref=story
The video above is just to give everyone an idea of the possible challenges that The Henshaw Boys could face because of this rare disease.
As you have seen, EB is a devastating disorder that affects a child from birth. EB sufferers lack a critical protien that binds the layers of skin together. Even the slightest touch or friction can cause the skin to tear, blister, or shear off. The wounds they experience are similar to third degree burns, and some wounds do not heal in time, leaving them susceptible to infections. EB also affects the internal organs and mucous membranes which leads to a shortened life expectancy, and a multitude of unknown issues.
It goes without saying that EB poses many challenges, including a massive amount of unexpected expenses, coupled with the unexpected fact that daycare cannot be an option due to the risk of wounds and infections.
Between all the weekly appointments, Mom and Dad have very limited work/school hours, which makes it difficult for them to make ends meet. Elijah is enrolled in 4 different therapies, and has undergone 2 surgeries so far, with at least 1 more in his future. Nicholas is enrolled in 2 therapies at this time, and may also require surgery in the future.
The closest EB Specialist is in Phoenix, AZ, which requires time off of work and travel expenses. The complexity of the challenges EB will present in their lives are unpredictable, but we do know their wound care will continue for the duration of their lives, as there is currently no cure for EB.
The boys coming into our lives has been a tremendous blessing. They shows us every day the definition of strength.
We are reaching out to all the Henshaw's friends, family, and supporters for donations in an effort to help Mom and Dad provide for the boys' needs and maintain stability in their lives. We appreciate any and every amount that can be spared.
Thank you for taking the time to read The Henshaw Boys' Story.
Everyone was completely blindsided by this, as Aplasia Cutis is not detectable in utero.
A few days after his birth, we learned that along with Aplasia Cutis, Elijah also had a very rare and serious skin condition, called Epidermolysis Bullosa (EB).
Two years later we were blessed with the arrival of Nicholas, who was also born with Aplasia Cutis and EB.
Above photo is Elijah's chest. This was the result of months of hard work to heal his chest. Once it broke open the first time (around 4 months old) it was a constant problem area until he was about 2.5 years old. Above photo is Nicholas's neck when he was around 4 months old. He would push on his ears and neck so hard that he would rub the areas raw. He still scratches his ears raw, and his mouth is frequently healing from friction from bottles and teething. Above photo is Elijah's foot. This is a mild example of how dry and itchy their skin is from constant healing. Mom and Dad use an anti-itch cream every day, along with 3 dosages a day for each boy of an oral itch medicine. Even between both of those medicines, they both still itch all the time.Above photo is Nicholas's foot. This was almost 3 months after he was born, Mom and Dad changed his bandages every single night for 6 months. Now they are able to change them every other day (or as needed for any serious wound). Both boys are disfigured on their feet from the Aplasia Cutis.Above is a photo of Nicholas's chest. This was the result of a blister that formed under his arm from him being picked up too hard. This wound took over a month to heal over.https://www.facebook.com/NTDLifeOfficial/videos/355064298338371/?hc_ref=ARTKfRfUE6MotPysbHdNZE3_YFA1hrUqmHEpfhkqxA__11jKsm5pyBrmKCfmAuaDseM&pnref=story
The video above is just to give everyone an idea of the possible challenges that The Henshaw Boys could face because of this rare disease.
As you have seen, EB is a devastating disorder that affects a child from birth. EB sufferers lack a critical protien that binds the layers of skin together. Even the slightest touch or friction can cause the skin to tear, blister, or shear off. The wounds they experience are similar to third degree burns, and some wounds do not heal in time, leaving them susceptible to infections. EB also affects the internal organs and mucous membranes which leads to a shortened life expectancy, and a multitude of unknown issues.
It goes without saying that EB poses many challenges, including a massive amount of unexpected expenses, coupled with the unexpected fact that daycare cannot be an option due to the risk of wounds and infections.
Between all the weekly appointments, Mom and Dad have very limited work/school hours, which makes it difficult for them to make ends meet. Elijah is enrolled in 4 different therapies, and has undergone 2 surgeries so far, with at least 1 more in his future. Nicholas is enrolled in 2 therapies at this time, and may also require surgery in the future.
The closest EB Specialist is in Phoenix, AZ, which requires time off of work and travel expenses. The complexity of the challenges EB will present in their lives are unpredictable, but we do know their wound care will continue for the duration of their lives, as there is currently no cure for EB.
The boys coming into our lives has been a tremendous blessing. They shows us every day the definition of strength.
We are reaching out to all the Henshaw's friends, family, and supporters for donations in an effort to help Mom and Dad provide for the boys' needs and maintain stability in their lives. We appreciate any and every amount that can be spared.
Thank you for taking the time to read The Henshaw Boys' Story.
Organizer
Anissa Montano-Hoepelman
Organizer
Marana, AZ