CCVI Trolley Run - 30th Annual - Mikey's Minions

This is Michael's Story

Michael William Arkell was born was September 5, 2014 at 33 weeks gestation weighing 4 pounds and 14 ounces.
After spending 39 days in the NICU at Overland Park Regional he got to go home to be with Mom and Dad and siblings Emma, James Jr, and Claire.

A few weeks after being home Mom and Michaels Dr. started noticing things weren't quite developing normally. So he was sent for Physical Therapy and Opthalmology
And soon after that in home Occupational Therapy and Vision Therapy. At first no one had any answers. After a 10 day stay in the hospital that January it was realized definitely something was going on but not sure what. That March he had an MRI that was abnormal and Neurology admitted him for testing that next day. His neurologist wasn't quite sure what it was but he was going to find out. 5 weeks later the results came back The answers were quite what we hoped. While we wanted answers those answers were difficult. Michael had a rare chromosomal abnormality or mutation. His is so rare 15q13.3 homozygous microdeletion syndrome that only 12 other cases have been reported since 2008. But oddly enough his neuro has seen a case before in fact his dissertation was written about it. So if there is an expert he would be it.
His prognosis not great visual impairment, non ambulatory, severe hypotonia, epilepsy, severe intellectual impairment and non verbal.

So we did what every parent does and research everything we could. Luckily our in home therapist worked for a place called CCVI. And in the area of the visual impairment they could help. Later that year he was diagnosed officially with CVI or cortical visual impairment. To be honest until we had Michael I didn't know what any of this meant. Luckily his therapists Becca and Hailey were so amazing and helped me understand so much about vision. I asked them a million questions. CCVI also administered a vision functionality test around 18 months so we could understand how it was functioning. At 2 years old he began going to the school. CCVI is really the most amazing place ever. I'm a super picky person about where my kids goto school and not once have I ever been worried. And its so great to have made some great friends and for Michael to have made friends. About halfway through that year he did unfortunately begin having seizures they are well controlled. Now at 3.5 He is in Miss Hillary's classroom goes 4 days a week and loves it everyday. He's super happy to be there and lets you know by vocalizing. And he has the most precious and adorable laugh of anyone I've any kid I've ever met. Our kids say how Michael have made us closer as a family and that is absolutely true but its also expanded our family because now it includes CCVI. He is so lucky to have a place so wonderful he can go and they make sure he has a wonderful early education and experience. So please give to our son's team no amount too little to help this wonderful place. And please consider walking or running with us on that day. We would love to have you as one of Mikey's Minions

Connect with others about this event and see who's going!

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Contributors on Behalf of Mikey's Minions

Donors

1. James & Sarah Arkell - Make a Donation
2. Jennifer &Richard Webb - Make a Donation
3. Ruth & Steven Shapiro - Make a Donation
4. Rose Kopecky - Make a Donation
5. Joy Hall - Make a Donation
6. Maria Proctor - Make a Donation
7. Tim and Rachel Payne - Make a Donation
8. Jason Grill - Make a Donation
9. Jennifer Monger - Make a Donation
10. Edward Ibarra - Make a Donation
11. Mary Ann Caffrey - Make a Donation
12. Nicole Zacharias - Make a Donation
13. Anna Brooks - Make a Donation

Event Participants

1. Travis Siegfried - Children's Center for the Visually Impaired Family Team Member
2. Todd Mackin - Children's Center for the Visually Impaired Family Team Member
3. Sam Kuhn, Troy Kuhn - Children's Center for the Visually Impaired Family Team Member
4. Anonymous - Children's Center for the Visually Impaired Family Team Member
5. Michael Curran, Emily Curran - Children's Center for the Visually Impaired Family Team Member
6. Joe Kelly, Amber Ashworth - Children's Center for the Visually Impaired Family Team Member
7. Jocelyn Anderson - Children's Center for the Visually Impaired Family Team Member
8. Shellie Galley - Children's Center for the Visually Impaired Family Team Member
9. Matt Moriarity - Children's Center for the Visually Impaired Family Team Member
10. Brooke Galley - Children's Center for the Visually Impaired Family Team Member
11. Debra Altenhofen - Children's Center for the Visually Impaired Family Team Member
12. Cody Raithel - Children's Center for the Visually Impaired Family Team Member
13. Brandon Weiss - Children's Center for the Visually Impaired Family Team Member
14. Stephanie Wright - Children's Center for the Visually Impaired Family Team Member
15. Daisy Weems - Children's Center for the Visually Impaired Family Team Member
16. Jessica D - Children's Center for the Visually Impaired Family Team Member
17. Patricia M Ibarra, John Lathrop, Marcus Scudiero - Children's Center for the Visually Impaired Family Team Member
18. Benjamin Altenhofen - Kids' Trolley Run (ages 10 and under)
19. Kayla Paap - Kids' Trolley Run (ages 10 and under)
20. Mary Ann Gormly - Children's Center for the Visually Impaired Family Team Member
21. Jaimie Link - Children's Center for the Visually Impaired Family Team Member
22. Zach Ballou - Children's Center for the Visually Impaired Family Team Member
23. Sandy Kendall - Children's Center for the Visually Impaired Family Team Member
24. Mark Jensen, Wendy Jensen - Children's Center for the Visually Impaired Family Team Member
25. Heather Ober - Children's Center for the Visually Impaired Family Team Member
26. Zach Kastelic - Children's Center for the Visually Impaired Family Team Member
27. Zach Hildreth - Children's Center for the Visually Impaired Family Team Member
28. Leah Ballou - Children's Center for the Visually Impaired Family Team Member
29. Jared Reid - Children's Center for the Visually Impaired Family Team Member
30. Lauren Mackin - Children's Center for the Visually Impaired Family Team Member
31. Tim Vieira - Children's Center for the Visually Impaired Family Team Member
32. Eddie Ibarra - Children's Center for the Visually Impaired Family Team Member
33. Jason Grill - Children's Center for the Visually Impaired Family Team Member
34. Patrick McGinnis, James McGinnis, Susan McGinnis - Children's Center for the Visually Impaired Family Team Member
35. Katie Paap, Kayla Paap - Children's Center for the Visually Impaired Family Team Member
36. Grant Nicholson, Steve Nicholson, Drew Nicholson, Ann Nicholson - Children's Center for the Visually Impaired Family Team Member
37. Jeremiah Griffith, John Griffith - Children's Center for the Visually Impaired Family Team Member
38. Beth Solet, Ryan Solet - Children's Center for the Visually Impaired Family Team Member
39. Jen Cramer, Jake Sharp - Children's Center for the Visually Impaired Family Team Member
40. Claire Arkell, James Jr Arkell, Sarah Arkell, Emma Arkell - Children's Center for the Visually Impaired Family Team Member
41. Elyssa Moderson, Matthew Moderson - Children's Center for the Visually Impaired Family Team Member
42. Alex Kipper, Lori Kipper - Children's Center for the Visually Impaired Family Team Member
43. Ryan Fitzgerald, Katie Fitzgerald, Abby Fitzgerald, Matt Fitzgerald, Emily Fitzgerald - Children's Center for the Visually Impaired Family Team Member
44. Eileen Weir, Tom Weir - Children's Center for the Visually Impaired Family Team Member

Sub-groups

1. Webb Family

Mikey's Minions has raised $9,197.00.
Mikey's Minions has a goal of raising $2,500.00.

progress: 367.88%