Jack was 3 when a mysterious rash overtook his body which was followed by neurological decline and loss of motor skills. The attacks came twice a year and increased in intensity. Jack lost his hearing, the ability to walk. His skin would blister, boil, and shed off multiple times. Finally, in March of 2019, Jack was 1 of 3 people in the world diagnosed with ACOX1 genetic mutation.
ACOX1, sometimes called Mitchell Syndrome, is an inflammatory disease that could be treated by the N-acetyl cysteine (NAC) antioxidant. Absent the medicine for 6 years, ACOX1 started eating away at the myelin sheath that protects Jack’s nerves and cells.
By 2019, Jack’s condition was worsening. His mother Fay is now taking care of Jack and his twin autistic brother, Ethan, full time. The family was down to a single income with Chris as the lone provider. To save money, the family moved in with Chris’ parents in their two story home in the Indianapolis suburbs of Greenwood.
The most important medication always tends to be the most crucial. In Jack’s case, it’s multiple shots of Kineret. The anti-inflammatory drug costs anywhere between $8,000 – $10,000 a month.
With Jack growing up fast, transporting him to the doctor in the family car became increasingly difficult. The family purchased a 2014 Honda Odyssey in the hopes they could convert it to an ADA accessible vehicle. But the car’s frame was damaged and the van had too many miles. The car was deemed unfit to carry such precious cargo and the investment, the last of their savings, was all for naught.
Jack is now 90 lbs and his mother and father take turns dead lifting him to get him to the house’s lone bathtub. The family rigged a 5-point harness to lift Jack into the crappy Honda so he can get to his physical therapy sessions and the Indiana School for the Deaf and Hard of Hearing. The more Jack grows, the harder he becomes to transport. Recently, Chris slipped two discs carrying Jack, leaving Fay as the only parent capable of carrying her son.
This family’s need for a safe living environment was more critical than we ever imagined. If the Sawyer family continued on this path, they were all going to be injured. Now that Jack is nearly 100 lbs., they must transport Jack from upstairs to downstairs using a stretcher they purchased on Amazon. That’s right, a stretcher.
The Sawyer family opened their front door to find a brand new ADA accessible 2019 Dodge Grand Caravan in the driveway. Half of the problem was solved!
The Sawyers also needed a new ADA-accessible home so that they could avoid further injury. STRATACACHE offered a dollar-for-dollar match up to $25,000 for the Chive fundraiser. Together, we were able to buy them a new home in Greenfield Estates. Greenfield Estates is a trailer park, but still far better than climbing those 15 steps with a 100-lb and growing boy.
Helping the Sawyers was another bright spot in the STRATACACHE Family history, and it is a moment that the entire community here is so proud to have taken part in.
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