The 2023 Ryan Kalkowski Miles for Miracles Fundraiser is meant to bring remembrance to the highly impactful life of Ryan Kalkowski and to honor him by learning, serving, and donating to help other kids in need at Boston Children's hospital. Donations will fund research, family support, and vital services not covered by insurance. When the fundraising goal ($4,000+) is reached, Ryan will be represented by a runner at the 2023 NYC Marathon.
How You Can Help: Learn, Serve, Donate
Learn about Ryan's Story: (Written by Ryan's mom, Nicole)
The story of Ryan Kalkowski is a love story about a boy who came to teach a family and leave behind impactful lessons intended to create change in the heart of anyone who listens to his story. It’s a rather long story, too long to tell sufficiently in this space, but my heart hopes to convey it’s a story filled with the undeniable truth that God is in the details of our lives. Many truly special encounters with others throughout Ryan’s life made us acutely aware that wherever Ryan went, God had a plan to use him. As Ryan’s family, we were helped beyond measure as we each grew to become better humans with each lesson Ryan taught us.
Our love story began on April 4, 2005, when we welcomed our perfect baby boy into our hearts. Bringing home our beautiful chubby-cheeked boy, excited for his adoring sisters and our growing family to bond and create memories, we had no idea the journey Ryan would take us on. He quickly and quite literally became the center of our lives.
Early on we noticed Ryan was sick often, but we first assumed it was because he was the youngest child in an active family. Ryan’s regression into autism is told in a 6-part year-long series in Redbook magazine beginning with the story entitled “Losing My Little Boy.” Redbook magazine’s story on Ryan and our family ends with us declaring our unwavering commitment, “there is no such thing as having too much hope” and our determination to help Ryan and others. We didn’t know then that a bigger story was going to unfold.
At 5 years old, Ryan’s life would take another dramatic turn when he had his first grand mal seizures. This hospitalization brought testing that revealed many abnormalities and more questions were raised leading us back to my mom's gut feeling from the beginning that something medical caused our son's regression into severe autism. It would take Ryan’s entire life, countless prayers, years of sleepless nights, too many tears, long suffering, multiple trips traveling to 5 different Children’s hospitals searching for answers, countless ER trips, many lengthy hospitalizations, and endless efforts before we would learn of his very rare genetic mutation causing a rare incurable disease.
For 16 years we searched for answers and in those last years we all endured agony when Ryan would suffer with tremendous pain. In Ryan’s last long hospitalization when he was 16 years old, whole genome testing uncovered the genetic mutation leading to his diagnosis. This discovery helped doctors better understand and more effectively treat Ryan’s significant pain.
Tragically for our family, Ryan’s diagnosis came too late. We hold onto gratitude that Ryan’s diagnosis brought him the help he desperately needed to lessen his severe pain so that he could comfortably spend his last days at home with his adoring family surrounding him. On September 22, 2021, heaven gained a beautiful Angel. On that day we promised our beloved Ryan and Jesus we would do our best to share Ryan’s story and share the lessons we learned in our journey together. Our great hope is to help others to use their hearts as they look upon others so they can see different is not less than and that how we treat others matters greatly.
We hope you’ll consider helping children like Ryan by donating to Boston Children’s Hospital through this Miles for Miracles campaign. We truly appreciate Ryan’s story being shared. It means a great deal to our family that Ryan is remembered.
Service Opportunities: Help continue Ryan's positive influence on others by serving as he did. See below for some ideas:
Ryan helped his family and friends to understand the importance of patience and understanding.
Practice patience and understanding with each other throughout the week, especially during stressful moments.
Discuss as a family what it means to be patient and understanding and come up with examples of how you can show these qualities to each other.
Ryan brought his family and friends closer together through the shared experience of caring for him.
Plan a family activity or outing that everyone can participate in, such as a game night, picnic, or hike.
Reflect on the ways that learning about Ryan’s story has brought your family closer together and share those memories with each other.
Ryan inspired his family and friends to become more involved in advocating for people with disabilities.
Share with each other what you learned about disabilities and the ways you can advocate for those who are differently-abled.
Ryan taught his siblings and friends compassion and empathy at a young age.
Make a conscious effort to listen to and support each other's feelings throughout the week, and encourage your children to do the same.
Discuss how compassion and empathy can help us connect with others and create stronger relationships.
Ryan encouraged his family and friends to appreciate the simple joys in life.
Take a break from technology and spend some time outdoors or engaging in a simple activity together, such as reading a book or playing a board game.
Share with each other what you appreciate about the simple joys in life, and make it a point to appreciate them more often.
Ryan showed his family and friends the power of unconditional love.
Write a letter or create a homemade card expressing your love and appreciation for a friend or family member.
Reflect on the ways that Ryan showed unconditional love, and discuss how you can show that kind of love to each other.
Ryan helped to raise awareness about autoinflammatory diseases, which often can present further implications with autism, epilepsy, mild hearing loss, immune deficiency, mitochondrial disorders, and other challenges.
Share information about autoinflammatory diseases on social media or with friends and family and encourage them to learn more and spread awareness.
Discuss the impact that raising awareness can have on those who are affected by autoinflammatory diseases.
Ryan inspired others to pursue careers in the medical field or in special education.
Take time to research medical or special education careers, and discuss the different options as a family.
Reflect on the ways that Ryan's life may have inspired others to pursue careers in these fields, and discuss how those careers can make a difference.
Ryan provided opportunities for his family and friends to develop problem-solving skills.
Work together as a family to solve a problem or challenge, such as putting together a puzzle or finding a creative solution to a household issue.
Discuss the importance of problem-solving skills and how they can be applied in everyday life.
Ryan taught his family and friends to celebrate small victories.
Each day, make a point to share and celebrate the small victories or accomplishments each family member has experienced.
Reflect on the ways that celebrating small victories can help build confidence and a positive outlook on life.
Ryan helped his family and friends to come closer to God, engage in meaningful prayers and conversations, and love each other more deeply.
Take time to pray together as a family, expressing gratitude and asking for guidance on ways you can help those around you.
Discuss the role that faith and prayer played in Ryan's life, and how it can be applied in your own lives.
Make it a point to show love and appreciation for each other throughout the week and reflect on the ways that Ryan's life showed the importance of love and family.
Donate: Any donation is greatly appreciated!
Your gift will:
give children battling the most complex diseases treatments they can’t find anywhere else;
help children in your town and those across the world get a second chance;
fuel 3,000+ researchers working to find cures;
help patient-families in crisis with urgent needs, including housing, food and clothing;
bring crucial care to families through not 1, but 4 outpatient psychiatry clinics;
and so much more.