Maya's Spark Fund

90
Donors

$27,025.00
Granted to Charity

2021-2022 Maya James was a fun-loving and quirky child. While she faced multiple challenges (Down syndrome & autism), she walked through her world with confidence and spirit. Maya tragically and unexpectedly passed away in the spring of 2021. In her name, her family started Maya’s Spark Fund whose mission is to raise money to provide scholarships to quality programs that support developmentally disabled people and their families live their best quality life in New Hampshire. Please consider helping us -- every donation is matched on a one-to-one basis. Your donation of $1 will turn into $2 for the fund! Maya's Story of Life: She loved people, dogs, clapping (especially clapping for her), music, action movies, technology, splashing in water, duck duck goose and her family. Maya was not self conscious -- she never questioned her right to be in the world. She had a confidence that she walked through this world with. Maya faced many challenges (Down Syndrome, Autism, Medically Fragile, and Non Verbal). However, she didn’t let that define her. Maya’s perseverance and problem solving ability were a great strength of hers. She faced her challenges head on and with a positive attitude most of the time (she was a teenager, after all). Maya was a “high maintenance chick” without a doubt. She had significant medical, social, and educational needs. At times it was overwhelming. But Team Maya always came to our rescue. Maya definitely embodies the idea of it taking a village to raise a child. Whether it was her educational team, her medical team, or her family, or the larger community, we all helped raise her and delighted in her growth. Maya passed away in April of 2021. I would love to be able to tell you exactly how and why, but as with many things Maya, her death doesn’t make sense. I don’t have a story that is consistent. It was unexpected and heartbreaking for everyone who knew her. In her legacy, we are starting a fund to help other families who face similar challenges. As in her life, we want her spark to inspire and help others. We are committed to making a difference in the lives of many children with disabilities. While her family is likely to be the biggest single contributor, every small-dollar donation will add up to be a powerful enhancer to the fund. Raising a child with a developmental disability is harder than you think. These children have extra doctor appointments, therapy appointments, and multiple meetings at school. The family as a unit needs support. Parents have to educate themselves and advocate for their child. As her mother, I was her voice and fiercest advocate. In New Hampshire, we are fortunate to have many programs that offer support. However, they often cost money and not everyone has the means to take advantage of the opportunities. Often one parent must stay home to care for their child. So they have less income and more expenses. As an example, a summer camp for Maya’s twin brother cost about $1000/week. Summer camp for Maya was 2-3 times that per week. This fund will establish scholarships for many of the programs that contributed so much to her (and our family’s) quality of life. Here are some examples: *Adam’s Camp is a therapeutic camp experience for kids with intellectual differences. ($2,700 per camp) *Camp Communicate incorporates communication devices into a true camp experience. ($1700 per camp) *The NAPA center is a cutting-edge, intensive therapy place offering feeding therapy and neuro suit therapy (to name just a few). ($125/session, $7500 for 4hrs per day for 3weeks) These programs directly benefitted Maya. However, other programs helped our entire family. *Zebra Crossings is an organization that supports kids with chronic medical conditions and offers a weekend retreat for families that have kids with Down syndrome. ($250 per family per weekend) *NH Leadership ran perhaps the single best workshop I have ever attended -- and as a teacher myself, I have attended quite a few workshops. NH Leadership gave me a vision of a full life for Maya and gave me the tools to achieve that goal. ($250 per participant) *The Parent Information Center helped me understand special education law and helped our whole school team work together more effectively. Please consider helping us to help other families throughout the state of New Hampshire. I promise you that I have the knowledge and motivation to make sure that any donation received will be well spent on programs (and not administration). While Maya’s life was way too short, these funds will keep her legacy alive forever and spark a better quality life for others.

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Emily James organized this campaign