Cole’s Health Journey

Dear friends and family of the Huizinga’s, 

I’ve been a friend of the Huizinga’s for over seven years and have loved watching their children grow. The sudden onset of Cole’s FND (Functional Neurological Disorder) has been pretty dramatic and dismaying for all involved and the Huizinga’s family life has been changed in enormous ways. Aside from the physical and emotional upheaval, this has put an undue financial burden on the family budget. I know Tom and Sharon are looking for ways to get help from special needs agencies, but in the meantime, the bills are piling up!

Let’s start a GoFundMe and swoop in with love to bless this family. Hopefully, if we can all give a little we can lighten the financial burden for them. Any amount that you feel led to give is so appreciated.

Love in Christ,
Dale Nye

The Long Version:
I asked Sharon to put together a list of the additional needs that have resulted from this diagnosis. It’s a LONG list, and probably doesn’t even include everything!

Nanny/mother’s helper - helps with: light cleaning, tutoring/helping with school, easy meals/meal prep sometimes, driving to and from some appointments or music classes or staying home with those who do not have class/appointments, playing with kids, reading to kids, allowing me quality time to spend with the kids as a group and individually, helping me to find time for Bible Study/Self Care and work/ministry, running errands. Works about 36 hours per week (No funding or grants available in Michigan unless the child/children are over 18 and/or have a trach) I am currently (11/16/20) looking into other ways to get help such as the Children’s Special Health Care Services and the CSN Fund. (Children’s Special Needs Fund?). We pay her $xxx per week pretax. The plan is to hire her for a year and then reassess our need. We need to do a W-2 for her and get an employer ID number as well. We considered sending the other children to school but decided it would actually add to the craziness of our schedule and required activities. (Sharon has expressed to me that the alternative to having a mother’s helper full time is that the children will not be able to get all of the help they need. Therapies and appointments will need to be severely cut down.)

Service dog- Helps with: keeps Cole safe, detecting seizures, getting help if he collapses, support in walking? Coping with anxiety and panic attacks, helping if he loses his sight or hearing. (Looking into grants and funding programs for this one)

Medical appointments, treatments and testing not covered by insurance. (Preventative care, etc.)

Car/Gas expenses for all of the appointments (12-15 per week- sometimes less- this includes all of the kids’ appointments but does not include our music class and lessons)

Therapy tools such as a lycra swing for sensory reintegration/coping with anxiety and overstimulation. Stress Balls. Theraputty for hand strengthening. Weighted lap pad for school. Balance board. Wobble Disc.

Books/trainings on FND and other related diagnoses such as seizure identification and care.

Railings for stairs for assisting when he is weak.

New front steps that are up to code and safe.

Portable ramps? Should we live in a multilevel home?

Wheelchair for long distances when struggling with leg strength and fatigue?

Some kind of gym membership/physical activity for over the winter months in order to keep anxiety managed and muscles healthy.

Sunglasses for light sensitivity and blue light blockers for computer work. Earplugs for sound sensitivity.

Sound Machine for blocking more noise when he is in need of a sensory break?

Finish and furnish his bedroom in the back of the house. (No kids running above him and a private space to get away from the busyness of our big family life. - We were in the process of doing this already. His condition just makes it more necessary.