On December 29, 1975, Gretchen Crystel Lucking was born. She blossomed into a beautiful baby after being born weighing only two pounds. Around the age of one, Gretchen suffered a seizure, which has forever changed her life and the life of her mother, Joni.
Joni Lucking is the daughter of Marvin Perna who resides in New York Mills. Joni ran a beauty salon for years in the area.
Soon after the seizure, Gretchen was diagnosed with Tuberous Sclerosis or TS.
Tuberous Sclerosis is a rare genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. Beyond the tumors, other symptoms include seizures, developmental delays, behavior problems, mental retardation, skin abnormalities, and kidney disease. Gretchen has tumors in her brain and kidneys, mental delay, and has skin abnormalities. TS affects 25,000-40,000 individuals in the US. TS can be present a birth, but signs of the disorder may be subtle and take time to present themselves. There is no cure for TS but medications are available to control seizures and behaviors. Intervention programs and therapy are helpful for behavior and developmental needs. The prognosis depends on the severity of the disease in each individual. At age 12, Gretchen had her first brain surgery. One of the tumors deep within her brain was neurologically too risky to remove. She did recover from the surgery. During adolescence and early adulthood, Gretchen demonstrated challenging behaviors. Throughout these years, Joni searched for the best educators, therapy, work and living conditions possible for Gretchen. Joni has been Gretchen's sole guardian for 32 years. Gretchen requires 24 hour care in her own apartment. Her care is provided by Personal Care Attendants (PCA's) and Joni. Her mother is also trying to run her own small business. They both live in Moorhead, MN.
In 2004, Gretchen was also diagnosed with lymphangiomyomatosis or LAMS which is a serious lung disease. Gretchen has been ill much of the past year and many traumatic events have occurred recently. On May 21, Gretchen had brain surgery in Fargo, North Dakota and two more within a week. Since May 21, she has been on a ventilator and is now experiencing respiratory problems. She developed a clot in her lung. On May 29, Gretchen was airlifted to St. Mary's Hospital in Rochester. Much of her medical care has been provided in Rochester over the past several years. On June 4, the doctors found a bacterial condition in her lungs. Gretchen has been heavily sedated until mid-June and has been off sedation since late June. The ventilator cannot be totally removed until her vital signs are stable and her lungs are recovered enough to breathe on her own. Gretchen has made some improvement . Her eyes opened a week ago and can breathe partially on her own. Gretchen is too weak to move. The doctors expect Gretchens' recovery to take months. She remains at St. Mary's Hospital.
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We, Gretchen's family are trying to take turns being with her in the hospital room. As you can imagine, this has been extremely difficult for Joni. We ask you to help us support Gretchen by sending prayers and any financial support you can offer. Your donation can be sent in care of the Gretchen Lucking Benefit, c/o Gate City Bank, 305 8th Street South, Moorhead, MN 56560.
On behalf of the Marvin Perna family, we thank your for help and generosity.
