Three sisters diagnosed with rare disease.
Kris Adelhardt has been a member of Gamma Beta, a Pratt chapter of ESA, a women's service organization, for well over 20 years. When her family began facing medical difficulties, Kris's Gamma Beta "sisters" knew they needed to find a way to help. "Gamma Beta sisters thrive on initiating labors of love," says Linda Broce, president of City Council for Pratt ESA, "The Adelhardt family has been through so much."
The ladies of Gamma Beta are breaking out their crockpots to raise funds to assist the Roger Adelhardt family with medical and travel expenses. Join the community for a bowl of chili and a cinnamon roll on Sunday, Feb. 10th for a free will donation.
Since May of 2006, the diagnosis of their eldest daughter, Kimberly, with the little-known Behcet's Disease, the family has traveled to the Mayo Clinic, Behcet's Clinic, and Johns Hopkins Hospital in search of a way to tame the symptoms of the illness that make day-to-day life painful.
When Kimberly's diagnosis was confirmed in 2006, doctors reassured the family it was not known as a hereditary illness. Despite that fact and an array of different symptoms, the middle daughter, Kaylee, received her diagnosis just a year and a half later, in January of 2008. Krystal was diagnosed with Behcet's Disease in August of 2010.
Kris says that the most interesting and—at times—frustrating element of Behcet's is how differently the illness affects each of their daughters. There is no known cause of Behcet's, but it is thought the rare disorder stems from an inflammation of blood vessels throughout the body.
Each Adelhardt girl deals with different kinds of Behcet's in which pain and other symptoms affect different areas of their bodies. Some pain settles in the abdomen, digestive track and kidney area, some in the spine, neck and head area while other pains shoot through the spleen or cause "flares" of absent vision and terrible headache. There's no recognizable pattern to when and how the attacks will occur.
The main challenge in controlling their symptoms was finding the right balance of medications that didn't overwhelm their systems with side effects that made the medication routine intolerable. The multitude of medicines is quite expensive each month.
Kimberly experienced a significant change in her illness when she and her husband became pregnant with their son last year. During their visit at Johns Hopkins Hospital, doctors predicted that her pregnancy would change her illness for an unknown duration of time. While she still has difficult days with Behcet's, areas of Kimberly's illness have improved, a welcome sign of progress in the family's experience with Behcet's Disease.
Kaylee finished her first year of college, and at her doctor's recommendation, decided to take at least a year off to focus on her health. She hopes to someday return to school and finish her degree, but getting her illness under control is her goal for now. Kaylee is employed part-time by Lanterman Motors and says, "Ralph and Ken are really understanding and just encourage me to take care of myself. I love the work I do there, and I'm gradually gaining strength."
Krystal is a junior at PHS, and prior to the aggressive attacks of this illness, she stayed active in National Honor Society, Student Council, Pep Club, cheerleading, flag corps, and two part time jobs. "The Barron Theater and Blythe Family Fitness have been so encouraging and willing to work with me. It means so much to me," Krystal says.
In dealing with the symptoms of her illness and struggling through medication for it, she misses quite a bit of school. She acknowledges her teachers and peers for their encouragement and assistance through everything.
Since September, Krystal has been experiencing attacks every three to five weeks, and Kaylee seemed to be losing ground as well. Roger says, "We knew we had to do something different to help the girls."
Kris and Roger are beyond grateful for their work families at Pratt Glass and The Peoples Bank for the flexibility, understanding, and strength they've provided through the family's trials with this illness. "They've always allowed me to be a Mom first," Kris says.
Cook Children's Hospital in Texas has decided to take on the girls' cases, bringing Krystal in for several week-long stays to observe her at the worst of her attacks and to best determine treatment.
A team of specialists outside the children's clinic will be working with Kaylee, who has now "aged out" of the children's clinic capabilities. They hope to pinpoint and control the Neuro Behcet's she has been battling through with "flares" of vision challenges and terrible headache pain.
The Cook doctors have experienced success with Behcet's by reducing daily medications for their patients and are optimistic in taking on the Adelhardt girls' cases.
While the Cook Children's Hospital is giving them hope for the future control of this illness, the family gives credit and expresses gratitude to the Kansas doctors and nurses who've worked with them to get them this far in the journey.
"We are grateful for every single 'good' day we are blessed with, with each of our daughters," Kris says. "We are filled with gratitude and want to extend it to everyone for their thoughts, prayers, and support; this has been quite an emotional journey for us all…to have our family, friends, and community walking this journey with us will forever mean so much to us, and we sincerely thank you."
If you go
What: A chili feed to raise funds for the Adelhardt family, sponsored by Gamma Beta ESA, with assistance from members of local 4-H groups and other service organizations
When:Sunday, Feb. 10, 11 a.m. to 2 p.m.
Where: Pratt Municipal Building
Menu: Twenty roasters of chili, 500 homemade cinnamon rolls, bottled water and coffee