Our Story

When we adopted our first son Charlie, we expected him to die.  He has a severe form of Recessive
Dystrophic Epidermolysis Bullosa.  This disease occurs because of a missing protein that binds the two layers of skin together.  The slightest bump or rub will cause skin to blister and fall off revealing wounds similar to 2nd and 3rd degree burns.  Even the inside of the body is affected.  Children endure extreme pain daily.  Dressing changes and baths take up to 5 hours.  Eyeballs can blister causing painful corneal erosions and days spent in the dark.  Hands and feet fuse making mitten deformities.  Blisters in the throat cause strictures making it almost impossible to eat and possibly cutting off the airway.  If a person does not succumb to infection...a severe form of Squamous Cell Carcinoma will develop and take the life.  When I heard of a clinical trial in Minnesota using stem cells to treat Epidermolysis Bullosa we met with doctors.  A perfect donor match was found and Charlie was accepted.  Then Wisconsin Medicaid denied this life saving treatment.  I contacted State Representatives, Congress, Media, and the community and we rallied for Charlie's cause.  Medicaid rescinded it decision and now because of Charlie, Medicaid is changing how they authorize life saving treatments for rare diseases.  One year ago today, Charlie had a Stem Cell Transplant.  He is one of the first children in the world with this disease that have ever seen such incredible results.  No longer does skin fall off, we use 1/100th of the dressings that we used before, and he can enjoy life with out pain like a regular 5 year old boy should.

  http://wearegreenbay.com/search-fulltext?nxd_id...

Now, we have been given the opportunity to once again save the life of a child.  We are adopting a little boy with severe EB who has never had a family.   He currently lives in a group home and has never had a "constant" person that he could depend on.  We do not believe that this is an acceptable way to live.  I am going to meet him in 3 weeks and I am flying him back to our home at the end of March.  This is the problem.  Seth does not have a bedroom or a medical/dressing room for baths and dressing changes.  We need to make our house wheelchair accessible to have him live with us and become our son.

http://www.postcrescent.com/article/20111231/AP...

The Impact

This little boy will have a bedroom not a "hospital room."

What We Need & What You Get

We need to build an addition to the first floor of our house that will include a bedroom, a specialized bathroom with a height adjustable bathtub, and a place for dressing changes.  We are saving our own money, some local community friends have had bakesales ect to help raise money, but we know that we need more help.

Other Ways You Can Help

Please share with as many people you know.  You can also visit my journal for any information on our family.  I have kept this journal for the past year and have posted all the details of Charlie's transplant.  http://www.caringbridge.org/visit/charletonknuth or you can simply google Charlie Knuth and you will find millions of sites and news footage of our family.  It takes a village to raise a child.  I will love them, advocate, give them a home and a family, and be the nurse, but I still need a little more help.  Thank you.