Wyatt J Vanhoffman

Wixom, MI

Great Lakes Catastrophic Illness Fund

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In honor of Wyatt J Vanhoffman

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100 Matsonford Road
Radnor, PA 19087

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Family and friends of Wyatt Vanhoffman are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Wyatt is a 3 year old boy living in Metro Detroit Michigan. He was born a healthy full term baby. At 4 months old we noticed he was struggling to hold his head up and stopped trying to roll over. His amazing pediatrician was able to get him into Motts Children’s Hospital at University of Michigan the very next day to see a neurologist. After his evaluation we still had no clue what was going on and had many test ordered to get done plus start physical therapy.

Just before Wyatt was 6 months old I (his mother) noticed that he was doing a weird movement like a wave of energy was traveling through one arm to another being that we knew something was going on i decided I better take a video of it. He did it again later that evening so I sent the videos to his neurologist who called me that night saying she suspected infantile spasms and to take him into ER first thing in the morning. Within a hour it was confirmed he was having seizures. We tried an high dose of a vitamin to see if it would help but didn’t so we got admitted to start a high dose steroids (ACTH). The steroid helped but as soon as we started weaning his spasms came back. We tried another medicine with little success and had a tough decision to try the steroid again in April 2020 at the start of the unknown pandemic that would make Wyatt immunocompromised and his dad was an essay worker leaving the house daily. We decided that we would stay separate for the time Wyatt was on the steroid which was really hard when the steroid made Wyatt very irritable. Unfortunately, the second round of steroid didn’t stop the spasms but caused him to gain so much weight he wasn’t even on the growth chart anymore.

Fast forward to just after Wyatt turning a year old we got his genetic results back showing he had a rare neurodegenerative condition TBCD gene which at the time only had 30 documented cases and thankfully was able to connect to two families in the US which one unfortunately lost one of their sons to this horrible disease. Knowing Wyatt’s condition is incurable I have made it my mission to give him the best life possible and let him experience as much as I can. He spends the summer going to farmers markets, going fishing and to the local parks. We live on a little hobby farm so he gets to adventure his own yard to visit all his pets.

As Wyatt is getting older he is getting bigger which makes it harder to transfer him since he doesn’t bare any weight on his own. This opportunity to get an accessible van would allow Wyatt to continue to go on adventures in the community and experience different places. I’ve been asked what I thought I was going to do on his future as he get bigger and honestly I’m not sure since most adaptive equipment is so expensive and we went down to one income since I’ve became Wyatt caretaker.

Wyatt has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!

November 23, 2022

Its been awhile since I've updated on here. The end of September Wyatt became a big brother. It has been an adjustment going from being an only child to having to share attention but he seems to enjoy it most of the time. Last week we met with Wyatt's neurologist and went in a little more details about the MRI he had done over the summer that unfortunately shows big brain changes. His neurologist said the type of changes (shrinkage) isn't from his seizures but from the TBCD genetic disease. There isn't any treatment or cure for his disease so over time he is going to continue to regress. We are continue to try to give him the best life and take things as they come.

August 10, 2022

I shared the fundraiser for the first time on Wyatts birthday. Within the first week he received $700 (over 1%) in donations which is a big first step. Now the next goal is to hit 10%. Thank you everyone that took the time to read Wyatts story and share his fundraiser. Everyone that has donated we really appreciate you and your generosity.