Heal Child Skin Disease Foundation

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Heal Child Skin Disease Foundation The Heal Child Skin Disease Foundation Epidermolysis Bullosa (EB) is a rare genetic skin disorder. bandages) or to fund their surgeries.

Children born with the disease are often referred to as “Butterfly Children” because their skin is as fragile as the wings of a butterfly. Any sorts of minor movement that causes friction could potentially turn into an infection for victims of EB due to their incredibly delicate skin. EB victims experience much of their life wrapped in bandages from head to toe to avoid any harsh movements that co

uld turn into a fatal infection. The HEAL Child Skin Disease Foundation is federally approved 501(c)3 non-profit organization that seeks to provide treatment and help for children suffering from EB and other rare skin diseases. We seek to raise funding to sponsor children with the disease(s). 100% of the money we raise goes towards these children in the form of medical supplies (i.e. We currently sponsor 600+ who are in constant need of our help. In addition to seeking funding for children with EB, our goal is also to promote awareness of the disease and the daily suffering EB children must endure through social media outlets. Please check http://www.healchild.org for more information.

Sixteen years old EB patient Mahdi is a dominos champion. Your support makes dreams of many children like Mahdi come tru...
22/04/2021

Sixteen years old EB patient Mahdi is a dominos champion. Your support makes dreams of many children like Mahdi come true.

We all should raise awareness about EB so that we never hear of a patient saying these words.
11/03/2021

We all should raise awareness about EB so that we never hear of a patient saying these words.

😰

“Butterfly Child is the story of a mother's journey through grief and incredible challenges. From the stillbirth at full...
04/03/2021

“Butterfly Child is the story of a mother's journey through grief and incredible challenges. From the stillbirth at full term of her first baby, followed by a miscarriage, to the birth of her son Nicky, diagnosed with Recessive Dystrophic Epidermolysis Bullosa, a rare skin blistering disorder that requires extensive wound care and is considered life threatening. Challenges include Insurance Companies refusal to cover the most basic needs for any Eb patient to Silvia's trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is 100% healthy and she never, ever, takes it for granted. “

Where to get my books: ❤ http://butterflychildamothersjourney.com/

28/02/2021

What if an oral spray could deliver EB treatments?
DEBRA-funded research has begun on a new oral spray that would treat and prevent the scarring that affects the moist tissue lining certain parts inside the body in EB patients.

Scientists, including Professor Liam Grover, will develop the spray for use in the mouth which they anticipate will reduce scarring, reduce tooth loss, and improve oral hygiene http://bit.ly/EBOralSpray

Maryam Eshkewari, age 23 has sent us her beautiful painting. She has overcome the EB hardship, and for sure her kind sup...
05/02/2021

Maryam Eshkewari, age 23 has sent us her beautiful painting. She has overcome the EB hardship, and for sure her kind supporters have contributed to her success.

By 12 years old EB patient, Zeinab, who is supported by generous people like you for her medical needs.
14/01/2021

By 12 years old EB patient, Zeinab, who is supported by generous people like you for her medical needs.

31/12/2020

Happy new year!

Let our 2021 new year's resolution be healing more scars!

How thankful to dear God should be each of us for every atom in our body that is in the right place to make all the mole...
03/12/2020

How thankful to dear God should be each of us for every atom in our body that is in the right place to make all the molecules intact and functional! Just one out of order protein can make a terrible disease like EB. But the EB patients are there to test us on how generous and kind we are. God bless them all and bless those who help the most.

Where to get the book:

“I will study hard and I don’t care even if I grow old studying, with the only goal to find a cure for this disease (EB)...
19/11/2020

“I will study hard and I don’t care even if I grow old studying, with the only goal to find a cure for this disease (EB).” Wrote 17 years old Fatemeh, on her beautiful painting. Wish her the best!

A butterfly baby!
12/11/2020

A butterfly baby!

Love this!

Neda, 33 from Tehran has been able to develop her art skills in despite of her suffering from EB disease. Your comments ...
05/11/2020

Neda, 33 from Tehran has been able to develop her art skills in despite of her suffering from EB disease. Your comments about her work would encourage her to continue pursuing her passion.

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