At the age of four, after many unanswered questions regarding the growing discoloration of the right side of her head, ear and neck, Kelleigh Marie was diagnosed with a rare, inoperable and life threatening birth defect known as arteriovenous malformations (AVMS). Our family was not prepared to hear the team of highly regarded specialists refer to Kelleigh's AVMS as extensive and affecting all of the major blood vessels of the entire right side of her head and neck, as well as her airway. We were told that she was at risk of hemorrage, severe disfiguration , as well as, congestive heart failure and that there was no cure.
Since her diagnosis, world reknown Vascular Interventional Radiologist Dr. Patricia Burrows has meticulously performed countless hours of highly specialized treatment several times a year in an attempt to control the progression of Kelleigh's birth defect and to keep her out of congestive heart failure while we wait for the medical research to develop the necessary chemotherapy agent to specifically target Kelleigh's disease.
The number of procedures Kelleigh has endured are too numerous to count and each time she has been at risk of blindness, paralysis, stroke and death. In addition to the procedures performed by Dr. Burrows, Kelleigh has had numerous set backs due to infection and pain because of tissue destruction related to the blood vessels causing abnormal or lack of blood flow. At age 6 she required a scalp resection because of the pain caused by dead scalp tissue. At age 7, she had a life threatening reaction to a chemotherapy agent used in an attempt to help control the progression of the abnormal blood vessel growth. She spent the week preceding her First Holy Communion in the ICU. The priest who performed the Annointing of the Sick on that Monday was the same priest who tearfully gave her First Holy Communion in the following Saturday when Kelleigh was given a 2 hour leave of absence from the ICU and joined her classmates at the church. At age 10, the AVMs began to seriously affect her airway and she required a tracheostomy. Another month of school missed.
Through all of this Kelleigh has demonstrated amazing Faith, Hope and Courage. Even in her darkest hours she has never given up. She is an honor student who dreams of becoming a doctor and Varsity athlete who refuses to let her disease define her.
2013 - The Year We Find a Cure
This year Dr. Burrows, in partnership with the Children's Hospital of Wisconsin, has committed to finding a cure for Kelleigh and others like her. In order to do so, we must raise $150,000 to fund research for a new drug therapy.
Please help Kelleigh and our family by donating to Kelleigh's Cause, a fund set up through Children's Hospital of Wisconsin.