The MiaThrives Team was thrilled to receive so many amazing nominations during the Angela’s Angels campaign 2020. There are so many incredible caregivers and members in the EB community. We were touched by so many stories that the task of choosing a winner became very difficult. Due to the generosity of one of our sponsors, we awarded all three finalists the $1000 prize and title of Angela’s Angel Award winner 2020. To learn more about the Angela’s Angel award click here.
Diane was one of the three 2020 Award Winners and her story and nomination told by her husband Jim is truly an extraordinary tale of the lengths a mother will go through for their child.
I want to nominate my wife, Diane, for this award. Diane exemplifies the qualities that characterize what it means to care for those suffering with Epidermolysis Bullosa. When our daughter, Angel was born thirty years ago, Diane totally surrounded herself with taking care of her daughter. Being the first woman to be ordained in the state of Tennessee as a Southern Baptist preacher, Diane had served as an associate minister until we heard the wonderful news that we were about to become parents.
Just three weeks prior to Angel’s birth, we moved to central Florida. Then, once Angel was born, doctors said that our precious daughter was not going to live very long. Diane and her mother, Mary Housam, an RN, set up a mini-hospital at our home and began to care for our daughter twenty-four hours a day. The day we were to bring Angel home, Diane discovered she had an infection and could not be around Angel. Diane’s twin sister, Donna Housam Key came from Pensacola, Florida, and helped to provide round the clock care. Donna was a Physical Therapist Technician and had also studied nursing. That first month was the hardest, but Angel began to thrive!
Not only was Diane her caregiver but she became her advocate. Both of us wanted to teach Angel that her disease did not limit her and that Angel could accomplish anything she wanted to. Diane also became Angel’s teacher as well and began to home school her. Angel did excel! In fact, Angel skipped a grade and loved learning.
Diane, also, began to be a spokesperson for the EB community and began to educate others about this devastating disease. She taught other parents how to do wound care for their EB children, she listened to their concerns and tried to encourage them, and then when an infant died with EB, Diane would often encourage the parents no matter where they lived.
When Diane did return to part-time ministry, Diane saw an opportunity to minister to other children and their families who suffered from long term illnesses. Diane began to be involved in a ministry called “Parents Night Out” at Arnold Palmer Hospital. As the volunteer coordinator and chaplain, Diane provided parents and caregivers with a night out along with a complimentary dinner at a local restaurant while volunteers played games, tutored the children while helping to complete their homework, did arts and crafts, ate pizza, and watched movies with the terminally ill children and their siblings. She did this for five years.
This was not her only concern. Diane also began to advocate for other EB children who were not getting the medical dressings or medical care that they needed. Diane made phone calls to government agencies to get help for these other EB patients. Diane even began to teach nurses in continuing education classes about recessive dystrophic epidermolysis bullosa in the state of Florida.
Diane also became very involved with DeBRA of America and appeared on several EB video campaigns to educate others about EB. Both Angel and Diane spoke to the National Sub-Committee for the Security and Defense Department in Washington DC trying to get additional monies for wound care research. Then just four weeks after 9/11, Angel, Diane, and I traveled to New York for Angel to raise funds for DeBRA of America. This was one of the largest fundraisers ever recorded.
In 2000, as Vice Chairperson and then in 2002, Diane served as Chairperson for the Have A Heart for EB at Walt Disney World. In fact, in 2002, over two hundred family members gathered for complimentary tickets to both Sea World and Walt Disney! It was a wonderful event.
As Angel excelled at school, Diane designed and sewed all of Angel’s Halloween costumes since Angel loved dressing up and winning the costume contests!
Then when Diane’s mother had a major stroke, Diane was not only Angel’s caregiver but her mother’s as well. Her mother’s condition was very fragile for four years but Diane persisted to provide the best medical care to both of them.
After our son, James Abbott faced his own medical issue, Diane took care of both our children even when our son had three major surgeries. I was in Ethiopia on a mission project during one of the surgeries and Diane was the first to encourage me to go anyway. She knew it was a ministry opportunity of a lifetime and believed that God would watch over her and our children while I was away.
When Angel was eventually looking at colleges, both of us decided that Angel needed to pick the college she wanted to go to without worrying about how she could get the medical help she would need. During one of Angel’s interviews at Vanderbilt, one of the directors said, “Angel doesn’t realize she has a handicap, does she?” Diane responded “No, she doesn’t. That’s the way my husband and I wanted it. Angel is so much more than her disorder. Her disorder will never define her.”
It was absolutely no surprise then that Diane decided to move to another state when Angel decided to go to Vanderbilt University. Diane had to even stop her doctorate just prior to finishing her thesis because Angel needed her most. `
Those seven years that our family lived in two different states were difficult. James, our son, and I traveled a lot back and forth to Tennessee from Florida. We were happy to know that Angel was getting her chance at the university she wanted to attend and James was able to finish his high school career. Diane sacrificed unselfishly as she gave up time away from our son and me.
When Angel got the opportunity to work at NASA one summer, we both told her that she just had to do it! Diane had just accepted a management position and could not travel with Angel to Maryland for the summer. I was not the one who usually did Angel’s daily medical dressings but Diane encouraged and taught me how to do them. She stayed behind and worked. Angel wanted a career working at NASA studying planetary geology and got actually got to do some GIS mapping for them that summer.
Then, when Angel developed cancer, once again Diane was determined to provide her with the best wound care and medical help that she needed. I watched her leave her to call to ministry to minister to our daughter and family. Angel passed away in 2018 and although it has only been a short two years,
I’ve watched a caregiver give her loved one the very best care for 28 years and then begin to slowly find herself and her calling once again.
My wife, Diane is an excellent choice for this award.
Stay tuned to hear more about Diane’s story on the MiaThrives podcast.
To check out seasons one and two click here.