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The Jaworowskis' Story
Caring for their Identical Twin Boys
We were introduced to the Jaworowski family in the fall of 2022 and had the opportunity to visit with them at home. Josiah (JoJo) and Jayden are 5-year-old identical twin boys with a rare neurodevelopmental disorder called MECP2.
Per mecp2d.org, “Children affected by MECP2 duplication usually have low muscle tone and strength beginning as infants. They have delays in mental development, speech development, and motor development…50% of males die before the age of 25 years old. One-half of the children with the disorder have seizures.”
When we met with Jayden and Josiah’s parents, Josh and Bethany, we were amazed at their uplifting attitude and faith in God to face this challenge head on. It was easy to see how proud they are of their boys, and how much love they are giving them throughout this difficult journey. Josh said about receiving their diagnosis, “Bethany and I took the news in stride, rather than responding with total devastation. We realized that the Lord had prepared Bethany to be (the boys’) mom as she has a wealth of relevant experiences working with people with special needs. I honestly would not know what to do without her.”
JoJo and Jayden have a very severe version of this disease that has developed faster than normal. They have multiple seizures daily and are frequently hospitalized from the seizures and other side effects. Providing care is more than a full-time job for Bethany, and she also works to manage the appointments, tests, and medications with 10-15 specialists that support the boys' health needs. Josh works a full-time job as an IT support specialist and adjusts his shifts to help Bethany care for the boys the best they can.
The family was recently forced to move into a new home very quickly, and they have been trying to settle in while caring for the boys over the past months. Unfortunately, the house is not fully handicap accessible, and moving in and getting organized with many hospital stays has been a challenge.
As part of this grant, the 4:12 Foundation would like to help improve the handicap accessibility into and within their home. We will also be providing cleaning and organizational services through a partnership with Blessed Home Project.
An initial cleaning has already taken place to help them get organized, and discussions with contractors are already underway. If you are interested in providing financial support for this grant, we welcome additional donations. We will be keeping you updated as things develop.
Update on the Jaworowski Grant
The Renovation Project is Complete!
6-months after we met the Jaworowski Family and heard their story, we're thrilled to share that their renovation project is finished.
As we shared in the post above, the family was forced to quickly move homes into a space that was not wheelchair-accessible for their twin boys, JoJo and Jayden, who are suffering from a rare neurodevelopmental disorder called MECP2.
Inspired by their uplifting attitudes and faith in God, we partnered with home renovation experts, the Galante Brothers, to convert their home into a more accessible space and help make their lives a little easier.
Welcome home, Jaworowski Family!
Entranceway
Before
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Steps leading to their house forced the family to walk to the end of their lot so the boys' wheelchairs could go up the hill and over the grass at a sloping angle.
After
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A wide, wheelchair-accessible sidewalk now makes transportation to and from the boys' frequent doctor's appointments faster and safer.
Bathroom
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Their traditional tub made bathtime a challenge.
After
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An accessible shower now allows the boys easier access where a hand-held showerhead helps with rinsing.
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The outdated bathroom lacked storage and became cold during their lengthy bathtime process.
After
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A heater now keeps the bathroom warm and cozy while the boys get cleaned.
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Updated amenities with additional storage help keep the family organized.
Sensory Room
Before
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The boys spent a lot of time in their sensory room, but it was hard to get into.
After
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Removal of wallpaper and a fresh coat of sensory-mindful paint gave this room a much needed refresh.
After
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A new pocket door provides an accessible entrance to the boys' room.
Special Thanks to Our Partners on this Grant
Special Thanks to Burn Boot Camp!
Burn Boot Camp in Robinson hosted a fundraiser for 4:12 Foundation. They raised nearly $2,000 which went towards our renovation project at the Jaworowskis’ home, specifically the wheelchair accessible shower. This will be life changing for the family!