Kinsley Stephen's "The girl in the plastic bubble"

Kinsley was diagnosed with Immunodeficiency, Centromere instability and Facial anomalies syndrome”, better known as ICF Syndrome.

Only 50 people in the entire world have ever been diagnosed with this disease. It is so rare that even most doctors have never heard of it. Essentially what this disease does is it robs the patient of antibodies enabling them to fight off infections and viruses. Something as simple as the common cold can be deadly for children with this disease. Kinsley has to take weekly infusions of antibodies to help her body fight off infections; she cannot be out in public places or around anyone who has been sick or has been around anyone who is sick. Most children with this disease do not live past the age of 15. As a complication of the disease Kinsley also has what they call ‘Failure to thrive” which causes her body to be unable to absorb the nutrients it needs. At 21 months Kinsley has just reached a weight of 18lbs. Her days are filled with tube feeding and weekly injections just to keep her going.

Her only option for recovery at this point is a bone marrow transplant. This will require Kinsley and her family to be at the Children’s hospital in Cincinnati for six months to a year during and after this life threatening procedure, only four out five people make it past the chemo and radiation process so it is essential that her mom dad and brother be able to be there with her through every step of the process. This will require them to temporarily move to Cincinnati and since their days will be spent at the hospital with their daughter they have no way to earn money for daily and living expenses. This is where you come in, we are asking well-wishers to help us raise money so this family can get to Cincinnati and be able to spend precious time with her without the worry of how they are going to pay for day to day living expenses. They need to just be there for to give their child the best shot she has at a life.