Arthrogryposis is a condition that affects the limbs, and in Mari’s case, it’s all four of her limbs. Mari, often called Kamari, has mobility in the fingers on her right hand and her head. Many children born with arthrogryposis benefit from early interventions, procedures, and therapies that enable them to walk and lead relatively independent lives. Unfortunately, this has not been the case for Kamari. Access to necessary resources has been limited, and early intervention opportunities have been scarce.
Kamari’s Daily Struggles

Kamari is now 14 years old and has very little independence. Her only autonomy comes when she’s in her electric chair, which is extremely heavy. Tragically, her mother cannot get this chair into their vehicle because of its weight. The cost of obtaining a lift or modifying a car to accommodate a lift ranges between $25,000 and $35,000—a hefty expense for many families, including Kamari’s.
When Kamari needs to go out, she depends on her mother, her 16-year-old brother, or friends to help her move from place to place. Life is significantly harder for Kamari and her family than it should be, and it challenges the fairness of their situation. Kamari is a wonderful person, full of life and spirit, and deserves more than these daily hurdles.

A Typical Teenager with Extraordinary Challenges

Despite her condition, Kamari is very much a typical 14-year-old girl. She loves TikTok, social media, and all the interests common among teenagers. She has a bit of sass, which adds to her vibrant personality. Kamari doesn’t want sympathy—she is fierce and confident.
Kamari’s resilience is both admirable and heartbreaking. No child should have to be as resilient as she has had to be. Her entire family shares in this resilience, facing daily challenges that most of us can’t even imagine.
Daily Life: More Challenging Than Necessary

Every day, just existing is a monumental task for Kamari and her family. Basic activities present undue hardships, but it doesn’t have to be this way. With the right support, Kamari’s quality of life could improve drastically. A quality wheelchair, a vehicle with a lift, and a home adapted to her needs are not luxuries—they are necessities.

Imagine having a bathtub that comfortably fits you, or doorways wide enough for your wheelchair. These are basic needs that remain out of reach for Kamari and her family. The community, systems in place, and all of us as individuals can step forward and make a difference.
How You Can Help
There are numerous ways that individuals and communities can help Kamari and her family. Whether through donations, volunteering, or simply spreading the word, each action can contribute to easing the burden they face. Here are some specific ways you can help:
1. Donations

Financial contributions can make a significant difference. Funds can be used to purchase a quality wheelchair, modify a vehicle to include a lift, and make necessary home adaptations.
2. Community Support
Local community members can offer support in various ways, from organizing fundraising events to offering volunteer services to help Kamari and her family.
3. Raising Awareness
Share Kamari’s story on social media platforms to raise awareness and garner more support. The more people know about Kamari’s situation, the more likely it is that she will receive the help she needs.
“The community and systems, all of us, just individuals, anybody who can do anything to help this family and to help Kamari have a better quality of life, and we should do that.”

Conclusion
Kamari is a resilient, spirited 14-year-old girl facing extraordinary challenges due to arthrogryposis. Her spirit and tenacity are inspiring, but the hurdles she encounters daily are immense. By coming together as a community, we can help alleviate these challenges and improve her quality of life. No one should have to struggle as Kamari and her family do. Let’s take action to support Kamari in achieving the independence and quality of life she deserves.