top of page
Colton.jpg

COLTON

COLTON'S STORY

 

Colton John Armengol was born on March 16, 2000, in St. Louis, Missouri.

At 3 months…noticed development delays…took him to world renown pediatric neurologist in NYC to better understand what was going on…did a skin biopsy that revealed nothing after 6 months of testing.

Then went to Cleveland Clinic to Advanced Pediatric Neurology…nothing.

At one year of age, he was not gaining weight, so made the decision (severe reflux) to get a G button and fundoplication.  Now were able to put his medications through the G-tube.

Years passed and then the Genome Project (2011/12) revealed a gene disorder in #863.

Cognitive needs and visual impairment he is unable to communicate or control his body movements.  He needs hand over hand to access any objects, he is non-verbal, repositioned throughout the day for comfort and also prevent skin breakdown, learning potential impacted due to his physical and medical needs.  Due to his lungs, a suction machine was by his side at all times.  He also needed to be in a stander to bear weight, and he required assistance for bathing and dressing him.  He used a medical bed, a wheelchair, a Hoyer lift, and nebulizer.

From ages 3 – 10, Colton enjoyed riding horses in the therapeutic horseback riding program at Ride On St. Louis.

Southview School, loved music therapy

Age 10 could no longer lift him on Angie’s own.

Age 12 Hoyer lift necessary

Age 13 nurse shattered femur when moving him on his bed

He was on 15 medications, including 5 for seizures.  As Colton got bigger, these were adjusted based on his needs

Bath chairs diff sizes

Colton went to Disney through Make-A-Wish in 2007, and once again to Florida. But traveling became too difficult for him and us, so we focused on making his home life the best it could be.

Due to uncertainty of Colton’s condition repeating, we chose to adopt a child (Ava Armengol) in 2001 from Russia

Colton suffered from a rare genetic disorder (GABRB2 gene mutation) from birth that required 24/7 nursing care.  Through extraordinary care provided by his family and the many nurses, doctors, and other caregivers who loved Colton.

 

Colton John Armengol passed away on October 26, 2021.  His family established Colton’s cause in his honor.

This poem has had a special meaning to Colton’s mom since his birth: Welcome to Holland (https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf)

----------------------------------------------------

MISSION OF COLTON’s CAUSE (https://www.coltonscause.org/)

Colton’s Cause aims to improve the quality of life for families of special needs children and young adults by providing financial support for necessary nursing care, mobility equipment, modifications to the home (handicapped accessibility), and other special needs.

 

ABOUT COLTON’S CAUSE

Colton’s Cause is a not-for-profit organization established in December 2021 to provide financial support to families of special needs children and young adults.  Colton’s Cause was founded in honor of Colton John Armengol, who passed away on October 26, 2021.  Financial support provided to families is generated via fundraising activities in partnership with the community, friends, family, and donors.

Colton was in the Sarah Lopez Waiver program, which provided for in home support through the State of Missouri Department of Public Health – Disabilities Division.  Due to his severe needs, the level of care Colton required as well as the shortage of nursing staff in St. Louis, we supplemented those hours with out-of-pocket funds.  

Colton's current Medicaid waiver, the Sarah Lopez waiver, requires us to take legal guardianship over Colton when he turns 18.  At this time, funding usually gets reduced.  Then, at the age of 21, the Sarah Lopez waiver expires, and he will have to go into a day program, which may require additional nursing hours that may not be funded, and we will therefore have to pay for them out of pocket.  

 

The need for one parent to stay at home due to the level of care required and also the need to often pay for out-of-pocket expenses creates a financial burden for most families.   

 

Find out more about Colton’s cause at https://www.coltonscause.org/

bottom of page