Rare, painful skin disease makes girl's life a hardship

Sitting cross-legged on her bedroom floor, Christina Minkey takes her left foot and carefully cuts away at the thin layer of blistering dead skin, despite the pain.

[Sandy MacDonald]

Hi Christina from all the way across our great country - I'm in Boston, Massachusetts and I have EB like yours. Seeing this picture of you sitting with your feet in the bowl brought back many painful memories but I want you to know it will get better as you get older. Keep the faith in yourself - Sandy M from Mass.

[Dennise Joseph]

Hello all,
I really enjoyed your story. I happen to be one of the Joseph's who joined Lynn and Gary Anderson at EBMRF. I work as the Admin. Asst. for the foundation.
We are planning an National EB Awareness Week celebration in October to bring as much awareness to this disease as possible.
I would love to stay in touch with you. Perhaps you would like to help us celebrate this important week? We are planning to start in N.Y. and travel across the country ending at Stanford.
My private email address is [e-mail].
Please feel free to contact me.
Gentle hugs to Christina from me!
Fondly,
Dennise Joseph

[Lesley]

Sandy MacDonald wrote:

Hi Christina from all the way across our great country - I'm in Boston, Massachusetts and I have EB like yours. Seeing this picture of you sitting with your feet in the bowl brought back many painful memories but I want you to know it will get better as you get older. Keep the faith in yourself - Sandy M from Mass.

Thank you so much!!

[Minkey family]

Dennise Joseph wrote:

Hello all,
I really enjoyed your story. I happen to be one of the Joseph's who joined Lynn and Gary Anderson at EBMRF. I work as the Admin. Asst. for the foundation.
We are planning an National EB Awareness Week celebration in October to bring as much awareness to this disease as possible.
I would love to stay in touch with you. Perhaps you would like to help us celebrate this important week? We are planning to start in N.Y. and travel across the country ending at Stanford.
My private email address is [e-mail].
Please feel free to contact me.
Gentle hugs to Christina from me!
Fondly,
Dennise Joseph

We just had our EB fundraiser in our home this weekend- great success!! We will definitely be in touch with you soon!!

[The Granier Boys]

Hi Christina! You are always in our prayers! We love you! Your Cousins in Los Angeles!

[Jon Kramp]

Hi Christina,
I'm a friend of your parents and work with the same company as your mom. I had dinner once with you and your sister and your dad. And had a great time visiting with you. I pray that you will be strong in your faith and know that you have many friends that love you. Keep your spirits high and I hope that you will be a writer one day so that you can tell many folks of your story. Hope to see you and your family soon. Your friend, Jon

[Candace Bradley]

I've had the privilege of knowing Lesley for more than 2 decades. What a blessing that the good Lord saw fit to put them in Christine's life. Jim and Lesley are raising an amazing family. God bless them and the other families seeking an answer to this disease.

[Erinn]

My son also has EB Simplex, and we have had the opportunity to meet and spend time with Christina. This family is an inspiration to us, and we can't express how difficult it is to deal with this disease, but having families like this one, help you to feel as though you're not alone. So, thank you Leslie, Christina, Jim and Elaina.

[Gerry Ward]

I am your Grandmother Pat's cousin and I just want you to know we are all praying for you. You have a great support group to keep in touch with and help you. Just know that God is there for you also and keep your trust in him and your faith.

[Johnny Zapara]

Christina,
You are a very precious girl. My wife and I (pastors of the Sacramento Vineyard) have prayed for you in person several times when you were a little girl. Learning more about this condition through this article is helpful and gives us clearer insight on how to continue praying for you. Hopefully we can pray personally with you again the next time your mom, our friend, brings you to Sacramento. Bless you and your bravery.
Johnny

[Sonia Bedrosian]

Hi Christina..... Happy Easter. I remember you and your sister, Elena, during one of my visits to Rancho Cordova, visiting Grandmother, Patricia. You are blessed to have a very beautiful grandmother and lovely Mom and Dad and Sister;sending hugs and many blessings to all the family...You are in my prayers for healing your condition. Cherish each day ....With love in Christ Love you. Sonia

[Minkey family]

All the comments mean so much to Christina and our family!! Thank you!!

[Irma Pelaez]

This is an input for Christina's health care.
Instead of cool water she can soak her feet in a tea made of this Mexican bark which name is "Cuachalalate". The Cuachalalate can be found at any Mexican Grocery store. The cost per package is only 69 to 99 cents. The content of the package is good to make a gallon of tea. When water is boiling, just add the bark and let it boil until water turns red (it takes about 4 to 5 minutes. If people drink it, it cures gastritis too but it would help greatly with her skin blisters. God Bless you

[The Haidet Family]

Christina,

We love you so very much. You are our HERO. You are a special girl and we are proud to have you as part of our family.

From Emma: I love you soooooooooo much!!!!!!! And am very glad to have you as my cousin, I miss you and hope to see you soon! love you, Emma (And love to the rest of the family!!!) From Abby and Isaac: We love you and hope to see you soon!!! Love, Abby and Isaac

[Patti Cassidy]

Hi, Christina.I met you and your sister when you were little ones, at your grandmother Pat's home. Your wonderful dispostion, in spite of your physical discomfort, inspired me and touched my heart. Reading about you present journey with this illness makes me want to really fight this disease for you and others. I pray that God will continue what he is doing in your spirit and will bring you physical relief.

[Karen McDaniel]

I have had the honor and privelage of knowing Christina for 2 years now. I am constantly amazed at her strength and inner beauty, as well as her outer beauty. The phrase, "An inspiration to us all" can seem overused, but in Christinas case it is the truest statemnet ever made of someone. Some one who is only 7 years old. I cant imagine my life now without knowing her and I am a better person for it.

[Sebastian McDaniel]

I hope you enjoy Easter I might see you in Sacramento. See you on the 16th by your friend, Sebastian.

[Regina in Va]

Christina, I saw your story and it reminded me of myself! I am one of 9 children which 3 have EB Simplex. My son, now 21 has it as well. My mother and grandmother also had it. I was curious if this is the case in your family? With the recent warm weather here in Virginia, I'm reminded of the pain which I know you are very aware of! I do hope one day this will go away for anyone with it. Please feel free to write me at [e-mail] You are not alone!!

[Mary Barron]

Hello Christina, To have the strength and faith that you have at such a young age. It makes me sad to think I do not have such faith at an older age. But seeing you and your family remain strong in Christ will only encourage others to also draw close to the ALmighty One. May God continue to bless you and give you the strength you need.

I love you all.

[Carmen Sofia Schroeder]

Dear Christina,

I meet you when you were very little. My son Christian also has EB Simplex-he often asks about you and wants toknow if you are brave like him when his blisters hurt. I always tell him that you are very brave. You are such a sweet wonderful girl and I am sure you will grow up to be a remarkable woman. You are very lucky to have a family that loves you very much. I hope to see you soon. Much love, Carmen Sofia