Faith

Name: Faith Lynn Smith

Location: Minnesota, USA

Form of EB: Junctional (Non-Herlitz)

Born: June 11, 2000

About Faith:

On June 11, 2000 our beautiful daughter Faith was born four weeks early weighing 6lbs 7oz and was 19 1/4" long. Faith was born with a rare skin disorder called Epidermolysis Bullosa (EB for short).

EB is a severe blistering disorder that causes much pain and can leave scars that last forever. At birth Faith had no skin on her hands, feet, and parts of her legs.
Two hours after Faith was born she was transferred to Children's Hospital where she spend the first three weeks of her life.

Faith is such a blessing in our lives, we wouldn't know what to do without her. Despite all of the painful blisters, bandage changing, and all of the itching she is such a happy little girl with a wonderful personality.
People that meet Faith for the first time, always comment on how happy she is and what a beautiful smile she has.

All bundled up (5 weeks old)

Faith has to have her bandage changed daily, which can be very painful. When Faith was born we wrapped her from the chest down. Then at 4 months we wrapped only her hands, feet and legs. Finally at eight months we were able to stop wrapping her hands but to this day we continue to wrap her legs and feet on a daily basis.

On June 10, 2001, the day before her first birthday, we bathed Faith for the first time (before this we would give her sponge baths). We have to leave her bandages on her legs while she is in the water due to all of the open wounds on her legs.

Faith's 1st bath in water, June 10, 2001

She (as any child or adult with EB) has a very hard time when water hits any open wound.

Faith loves to be around people. She loves playing with her cousins, aunts and uncles, and her grandparents (as do they love being around her). Our families have been so supportive, loving, and helpful with Faith, I don't know what we would do without them. Everyone is very careful around Faith, for causing her more pain is the last thing anyone would want to do.

On June 9th 2001 we had Faith's 1st birthday party (2 days before her actual birthday). She had such a good time and got lots of wonderful gifts. This was a day that, in the beginning, we were not sure we would see. We have truly been blessed with a beautiful, loving, happy little girl that will always be the light of our life and the apple of our eye.

Thank you for taking the time to read about Faith and EB. Our main goal in life is to have a cure for EB so that our little girl can go through life without the pain of blisters, bandage changes, and the awful itching that goes with EB.

Faith with her birthday cake in her new high chair

Email Faith's mommy

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