Kingsley Fights EB
Donation protected
Buenas Everyone!
On behalf of my family and I, we want to thank you for your continued prayers and words of encouragement. We love you all.
Kingsley has a very rare genetic disease called Epidermolysis Bullosa (EB). He was diagnosed EB Simplex in Philippines, however a blood test is the only way to be sure. It’s essential for us to know what type he has in case we decide to try clinical trials and to best understand how to care for Kingsley.
The best way to describe EB, is imagine your layers of skin as velcro. They stick to one another. Kids like Kingsley are missing a Velcro to anchor the skin down. Meaning, his skin sort of floats and is easy to scrape and tear. This isn’t the only problem though. He also gets blisters in his mouth and if we’re not careful, his throat. He has the capacity to blister internally.
We are trying to raise funds because genetic testing is extremely expensive. It’s $2,100.00 per person. Matthew, Kingsley and I need genetic testing. This will indicate if Kingsley has a gene mutation, or if matt and I are carrying the gene that causes EB. So total, that’s $6,300.00. As for insurance companies, they don’t cover ANYTHING! No wound care supplies. No genetic testing even if it’s medically necessary. And when I call, they just say, “it’s just not covered.” The only treatment they have for kids with EB is wound care. That’s it. There’s NO CURE!
Kingsley needs more than just genetic testing. As of right now, we agree it’s best for me to stay home and continue to take care of Kingsley. Daycare is completely out of the question. As far as I know, there’s no childcare facility that knows wound care regiments for kids with EB and I will not jeopardize my sons healing.
He needs special clothes that don’t slip so he doesn’t get blisters. (Yes, sometimes his clothes give him blisters.) He needs special shoes because EB effects his ability to walk without blistering himself up. He needs medical grade sheepskin to reduce trauma to his knees and elbows when he crawls. He also needs special wound care supplies since all sorts of tape can tear him up. I hate to use the term “tear” but that’s really what happens if you put any tape on my son.
Your donation will help us get answers sooner especially since I can’t work right now to take care of our Kingsley.
Feel free to message me any of your questions. I also posted some stories about Kingsley in my blog. I have yet to write an update but I will keep you all posted.
Thank you all again so much. Much love from our King Kong and my family!
visit www.wordpress.com/AnUnapologeticMom and look for “This is what a strong family looks like” to see Kingsley’s journey.
God bless and please continue to pray for us.
On behalf of my family and I, we want to thank you for your continued prayers and words of encouragement. We love you all.
Kingsley has a very rare genetic disease called Epidermolysis Bullosa (EB). He was diagnosed EB Simplex in Philippines, however a blood test is the only way to be sure. It’s essential for us to know what type he has in case we decide to try clinical trials and to best understand how to care for Kingsley.
The best way to describe EB, is imagine your layers of skin as velcro. They stick to one another. Kids like Kingsley are missing a Velcro to anchor the skin down. Meaning, his skin sort of floats and is easy to scrape and tear. This isn’t the only problem though. He also gets blisters in his mouth and if we’re not careful, his throat. He has the capacity to blister internally.
We are trying to raise funds because genetic testing is extremely expensive. It’s $2,100.00 per person. Matthew, Kingsley and I need genetic testing. This will indicate if Kingsley has a gene mutation, or if matt and I are carrying the gene that causes EB. So total, that’s $6,300.00. As for insurance companies, they don’t cover ANYTHING! No wound care supplies. No genetic testing even if it’s medically necessary. And when I call, they just say, “it’s just not covered.” The only treatment they have for kids with EB is wound care. That’s it. There’s NO CURE!
Kingsley needs more than just genetic testing. As of right now, we agree it’s best for me to stay home and continue to take care of Kingsley. Daycare is completely out of the question. As far as I know, there’s no childcare facility that knows wound care regiments for kids with EB and I will not jeopardize my sons healing.
He needs special clothes that don’t slip so he doesn’t get blisters. (Yes, sometimes his clothes give him blisters.) He needs special shoes because EB effects his ability to walk without blistering himself up. He needs medical grade sheepskin to reduce trauma to his knees and elbows when he crawls. He also needs special wound care supplies since all sorts of tape can tear him up. I hate to use the term “tear” but that’s really what happens if you put any tape on my son.
Your donation will help us get answers sooner especially since I can’t work right now to take care of our Kingsley.
Feel free to message me any of your questions. I also posted some stories about Kingsley in my blog. I have yet to write an update but I will keep you all posted.
Thank you all again so much. Much love from our King Kong and my family!
visit www.wordpress.com/AnUnapologeticMom and look for “This is what a strong family looks like” to see Kingsley’s journey.
God bless and please continue to pray for us.
Organizer and beneficiary
Alissa Eclavea
Organizer
Agat, GU
Janecia Celianna Santos
Beneficiary