We previously lived in Central California and raised organically fed pork on pasture. When Kal was diagnosed with Duchenne, we contemplated getting out of farming, but Kal was not having it. Farming had already become a part of his identity, and he wanted to continue doing what he knew. Seeing what farming meant to Kal, we told him that we would continue farming for as long as he would like. We think Kal made the right choice because living on and running a farm allows us to spend lots of quality time with our kids. This may be the best aspect of farming because Duchenne has shown us that time is precious.
Our farm had outgrown the 11 acres that we owned, and we knew our modular home would not accommodate Kal’s future needs. We thought about seeking out more land and a home that would accommodate Kal near our previous home. Still, the cost seemed to limit the amount of land and type of home that we would purchase. We began to brainstorm about what would put us in the best position to farm and fight Duchenne. We thought about travel, type of house, type of land, climate, air quality, quality of care for Kal, and cost of living. Our thoughts were that logistics win wars, so we better strategize if we wanted to beat Duchenne.
Our search brought us to a 53-acre piece of land with a home that would meet Kal’s future needs. We have been living in our new home for nearly 3 weeks now and are very happy with our choice.
Living on the west coast – Made for long airplane rides to visit family and receive treatment on the East Coast.
Modular home – Prevented mounting necessary equipment to move Kal in the future because it was not structurally sound enough.
High taxes – Duchenne is expensive. We want to keep every dollar we can to help Kal.
High housing prices – We wished to buy more land to expand our farm and buy a home that would suit Kal’s future needs. Prices in California limited our options.
Fires/Air Quality – Each summer brought fires that would cause our home to be surrounded with smoke for weeks at a time on some occasions. Arid conditions in California brought on the fires. We feared that this would unnecessarily tax Kal’s lungs and breathing muscles.
Living on mountainous terrain hard to navigate for Kal – Hills began limiting where Kal could walk on our property.
What we searched for
More rain/improved air quality – We were looking for an area that was not drought-prone so that fires and air quality would no longer be an issue. Added rain would also improve grazing conditions for the animals that we raise on our farm.
Lower cost of living – We want extra dollars in our pocket to help fight Duchenne.
Traditionally built home – To allow the installation of equipment that may be necessary for the future.
Centrally located - to make travel to treatments easier and collaborate with different Duchenne-oriented organizations. Centered between family located on both coasts.
Close to a Duchenne-Certified Care Center – to allow Kal to receive the best possible care.
Open layout – to allow easy wheelchair navigation.
Plenty of property for Kal to explore on his terms – We want Kal to have plenty to do right in his backyard.
Flat usable land to help Kal navigate with greater ease – setting Kal up for success!
What we ended up with
Purchased a home in Texas that is a traditionally built house. We will be able to install equipment to help lift and move Kal in the future.
The home has enlarged doors on bathrooms and a wide hallway to allow wheelchair access in the future. A shower that Kal can easily enter as well.
The home has an open floor plan that will make navigating with a wheelchair easy.
The home is located on 53 acres of land that is easy for Kal to navigate when walking and while driving our off-road utility vehicle. The utility vehicle is a way that Kal can quickly get around and help with farm chores. We feel the utility vehicle is an essential piece of equipment to help Kal feel included and build a sense of pride that he can perform farm chores and contribute to the farm's success.
Located 2 hours away from a Duchenne Certified Care Center.
Soon our farm will have cattle, pigs, and chickens. Kal will help fix fences, haul feed, and move animals using the utility vehicle. Kal is at his happiest when he is helping perform work on the farm. We feel it is vital to make sure Kal has a way of performing work on the farm no matter what lengths we must go to for him to accomplish that work.
Support Flex For Kal's Fundraiser at https://secure.givelively.org/donate/cure-rare-disease/flex-for-kal