Jacob’s Story
From Jacob’s mom…
Jacob showed signs of a disability at 6 months falling off the normal growth and development milestones. At 11 months we started a work up to identify the reasons for his physical delays. At the age of 2 he was given the diagnosis of cerebral palsy but the Dr’s were not convinced he truly had CP. We continued testing as Jacob’s fine and gross motor skills slowly declined and his body showed signs of other underlying factors. Through the years he had multiple DNA studies trying to determine the cause. His incredible health care team treated his symptoms even though we did not have a cause. He was non verbal, had a feeding tube for all nutrition, spinal fusion at the age of 10, multiple hospitalizations and used a power wheelchair independently until 10th grade. In 10th grade his skills began decreasing at an increased rate. His bedroom was like an intensive care unit with lots of medical equipment.
He was diagnosed with leukodystrophy H-ABC, TUBB4A, at age 26 and passed away at 28 due to this progressive disease.
He lived at home with us. When he passed away our hearts were broken but we always knew he was in heaven with the Lord. We now talk about him everyday.
These are a few of the things we miss about Jacob.
- His love filled our home. Our home felt so empty after he went to heaven.
-He had such Joy and happiness for everyday, and this taught us to be grateful for each day and all the blessings we have.
-He loved life and everyone he had contact with.
- His huge smile filled the room and people loved to be around him.
- He loved his sister and family we miss him being with us when we are all together.
- He had a deep relationship with God. He loved to pray and taught us a lot about God’s love for all.
- He loved sports. We are in Minnesota and he loved the Vikings, Twins, and MN Wild. His big rival were the Wisconsin Packers!!
- He loved it if Mom n Dad would go on vacation and his wonderful care team would move in and live at our home. We called it “ his vacation” and his care givers would spoil him!! He loved every minute!!
- We miss taking care of him. Protecting him as that was our focus and purpose. We loved sharing everyday with him.
- Most of all we miss his love. He filled our hearts everyday with his love, joy and happiness!!
We are so encouraged about the new research and treatments. We hope with all our hearts there is a cure someday soon!!
A heartfelt note from the Foundation:
From the bottom of our hearts, we are truly sorry for your loss. Jacob touched many hearts and from all the stories we have heard, he was an incredible young man!
