Hi, My name is Cris, and I live across the street from a beautiful 13 year old young lady named Kayla. Two years ago (2019) when Kayla was practicing for her 5th grade graduation from Myers Elementary in Grand Blanc, MI, she passed out and fell off the stage risers. Prior to this there was no indication of the devastating diagnosis the family would receive. After several misdiagnosis' it was determined that Kayla has an aggressive form of pediatric-onset Lupus.
After the first month, Hurley Medical Center realized that they were not suited to handle the specialized care Kayla would need. The family was referred to University of Michigan-C.S. Mott Children's Hospital in Ann Arbor , MI. The family is truly blessed that U of M is one of 50 hospitals nationwide that is part of a network that collaborates to research pediatric Lupus. Kayla's disease is intense and very aggressive, and her case is the subject of four separate independent research studies. Her case has been shared with doctors across the country as to shed light on how to best treat her. She has had multiple adverse reactions to medications which limit her treatment options to only the most aggressive and invasive treatments available. For every medication to treat one ailment there are negative side effects that affect multiple organs and systems. The seriousness of this disease is such that Kayla was granted a wish from the Make-A-Wish foundation and she received a wig from Maggie's Wigs for Kids after she lost her hair from the chemo treatments.
Her treatments are extreme, frequent, painful, and are life-long. Currently, she has up to three infusions each month, chemo every other month and monthly consults with her team of doctors overseeing the case.
Her mom, Jamie has had to retire from her job of seventeen years to stay home and care for Kayla as her non-epilectic seizures are becoming more frequent and dangerous. This has reduced the family income by more than half. This disease has caused numerous secondary complications - too many to list - one of which is rheumatoid arthritis, which makes navigating the stairs in their 2-story home nearly impossible and very dangerous. The fall risk is unpredictable and happens without any warning.
What Kayla needs from us, her tribe and community, is a ground level bedroom and bath added to their home. Our community is coming together to help support this family. COVID-19 squashed any fundraising efforts last year but we are back on track. If you see our flyers and posters for events, please come out and meet this family and help in anyway you can. Please share and help get Kayla's story heard.
We need to come together and give back to a family that unselfishly gives continually year after year. For the past four years Kayla has donated her Christmas money to the Lapeer County Animal Shelter. Her sister donates hers to the Grand Blanc Township Police K9 unit. Kayla is very active in Girl Scouts, selling over 2500 boxes this year for her troop.
This family wants to stay in their home, their neighborhood, and be near their tribe. Please help in anyway that you can - donations, volunteering at our benefits or sharing this story. Thank you for your consideration and generosity! God Bless!
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