This document summarizes the life of William Douglas Pickett who was diagnosed with Lissencephaly at 4 months old and was given 2 years to live. It discusses his parents' advocacy work on his behalf which included testifying before legislative bodies, serving on committees, and campaigning for increased funding for research. It also describes the creation of support groups by his mother to help other families of children with cerebral palsy share resources and strategies for parenting medically complex children. The document ends by announcing William's passing in November 2015 at the age of 11.

1. W I L L Y : L I F E ,
L O V E , A N D
B E A U T I F U L
C H A O S
O U R L I F E W I T H A T E R M I N A L L Y I L L S O N
D A W N K R A U S E

2. W I L L I A M D O U G L A S
P I C K E T T
Unremarkable pregnancy
Unremarkable birth
Four months of the
“unknowning”

3. JULY 9, 2004
LIVES CHANGED FOREVER
• Diagnosed in the University of
Michigan Emergency Department
after an MRI showed “smooth brain.”
• Official primary diagnosis,
Lissencephaly
• “He will likely only live two years.”
• There is no magic pill.

4. What Now?
Doctor’s
Appointments!
13 Specialists
Therapy.All.Day.Ever
y.Day
Hospital Lifestyle
Down one job! Less income +
more expenses= Not Good.
Major Grieving
Grant and Gabby?
Bye Bye, FriendsEarly On Services
New Vocabulary
The Hunt for Services
Chaos
But, also, the ultimate meaning of love…..
Speech

5. But Then…..
School Happened!
• Law requires this
• Because why not
• Peers
• Healthier Willy

6. School through the years…

7. WE ADVOCATE TO CORRECT INJUSTICE
• Jackson County Board of Health, Parent Representative
• State Congressional Hearing testimony – cutting Children Special Healthcare Budget
• Public Speaking
• University of Michigan C.S. Mott Children’s Hospital Parent Epilepsy representative
• University of Michigan Patient Family Care Committee Member
• Campaign to highlight the unfair practices of insurance companies
• Wheelchair for Willy!
• Mike Simpson
• Word of mouth, “Can you help my friend find services?”
• The need for a group to fill in the gaps! “The Family Well-Being Gap”

8. #WILLY GOES TO WASHINGTON
• 2015 Medicare Summit in Washington, D.C.
• Advocated on behalf of National Coalition for Assistive and
Rehabilitation Technology (NCART)
• 220 Congressional visits in 3 days
• President Obama passed our bill but a stripped down
version, as is politics!
Willy was the only
Pediatric patient / child
with the group. His
impact was huge!

9. DNR’S, PEDIATRIC PALLIATIVE AND
HOSPICE CARE, AND STUDENT RIGHTS
• This is it. The big advocacy project we’ve been waiting for!
• Terminally ill but not actively dying as a medical concept. What does Willy’s life look in the meantime? How
does special education fit into this?
• Do Not Resuscitate orders in an educational setting
• State of Michigan Senate bills 784, 786, and 827 (2018)
• State of Michigan House bills 5417, 5418, 5419 (2020)
– 784: Redesigning the state’s current DNR Act to include pediatric patients
– 786: Giving guardians the same rights with regards to DNR’s as biological parents
– 827: Amending the school code, require schools to honor DNR’s and providing liability
– Passed the Senate unanimously in June 2018 and died in Lame Duck.
– Starting over in the House, currently awaiting a vote on the House floor.

10. MY WORLDS COLLIDE
Cerebral Palsy Families Together of Michigan is
a parent-led, professionally supported 501c3.
Our mission is to provide support, education and
advocacy to families, adult mentors, and
caregivers of children with cerebral palsy. *501c3
pending
Under the direction of Dr. Edward Hurvitz, Chair of the
University of Michigan’s Physical Medicine and Rehabilitation
Department, the board of CPFTOM represents a broad range of
expertise with decades of collective experience in caring for
medically complex children.
Their mission is centered on the belief that leading-edge
pediatric research, increased awareness, and education will lead
to new treatments of CP, improving the lives of impacted
children and their families.

11. THE FAMILY WELL-BEING GAP
• The healthier the family and caregivers, the healthier the child.
• Parents tend to be more motivated to find what will work than professionals because it's their child and a
parent will do anything for that child. We don't see our kids as a condition and thus question limits.
• The power of a collective mindset!
• There is no substitute for life experience from parents who have lived it.
• Groups like this are helpful in feeling like we are not alone in a world that can often feel isolating as parents
with complex children
• Almost everything we know about living this life has come from our contact with other parents; not from
professionals.
• The collective “we” (parents, caregivers) fill in this gap that is created between all the professionals in your
child’s team

12. We are deciding on our next family vehicle. Our daughter is almost 3 and has CP, currently we have a total of 4
kids under 10 and drive a 3rd row Nissan Pathfinder.
Any child car seats that swivel? My back is killing me!
Is it harder for CP kids to potty train for some reason? I feel like a failure that they’re going to be six and still in
diapers and pull ups! They’re right around 40lbs. Are there tips, tricks, books, anything?
Looking for a special needs dentist for my daughter. It is time to take her but I'm worried how it will go.
Looking to get a bed for my 3 year old, he’s starting to outgrow his crib. I was going to try the insurance route,
but wanted to get some feedback first. We need something that he won't fall out of! Was told it will take forever
through insurance and most people get denied!
Urgent need for IEP advocate! Specifically regarding homebound direct teaching hours. Willing to come to the
Lansing Area.
Some days I feel like I’m losing my mind. I need me time. I need to be a wife again. And I feel like my other child
is losing out.
I am flush with syringes but need blue pads! Trade anyone??
I’m having a problem understanding my daughter’s neurologist. (Not a language issue, but comprehension!) Can
someone near Ann Arbor come to the next appointment with me and help me take notes?

13. STRATEGIES THAT MAKE US, AS PARENTS,
MORE SUCCESSFUL IN THE CONTEXT OF
PARENTING SPECIAL NEEDS CHILDREN
• I am not alone
• There are other children just like Willy?
• We are exponentially and collectively more savvy.
• Why reinvent the wheel? Learn from your counterparts who are a few steps ahead of you.
• Tips, tricks, and ideas!
• Look at the bigger picture and connect puzzle pieces
• We have something to contribute.
• Exploring new ideas and commiserating common problems
• Resource sharing. (I need to trade 60mL syringes for blue pads! Anyone?? Anyone??)
• Tax law and SSI changes, benefits, accessible, leisure and recreational areas, advocacy
opportunities, new therapies, practitioner reviews, and a place to vent or get much needed
support.

14. • CP is the most common childhood motor disability.
• The prevalence of CP is not decreasing, despite advances in
neonatal and obstetrical care.
• It is estimated that 1 in 323 children and over 800,000 Americans
are impacted by CP.
• There has been no dedicated U.S. line item funding for CP
research even though it has a higher prevalence than muscular
dystrophy, Parkinson’s disease, childhood cancers, hearing loss,
spina bifida, hemophilia, fetal alcohol syndrome, or cystic fibrosis.
(Source: CDC, NINDS/NIH)

15. YOUR RACE HAS BEEN RUN, WILLY.
WELL DONE.
William Douglas Pickett
March 12, 2004 – November 5, 2015