When Colton was less than a year old, he was diagnosed with a rare genetic condition. I spoke with Michelle Hutchinson, Colton’s mom, all about her son’s story, how Colton’s XXXtraordinarY Cause came to be, the incredible outcomes they’ve seen, and what lies ahead for their organization.
When speaking with Michelle, she underscored first and foremost the importance of an early diagnosis in Colton’s journey: “We were very fortunate in that we got an early diagnosis. That’s not the case for a lot of kids with his syndrome.” When the family from Red Hook, NY, was referred to a geneticist when Colton was only nine months old, they learned that he had 48XXXY. This rare genetic condition can impact various aspects of development and health for boys with the syndrome, often causing physical delays due to low muscle tone, speech delays which later manifest into language-based learning disorders, and behavioral struggles. It was critical, then, that they received the diagnosis when they did, as this allowed Colton to begin occupational therapy, speech treatment, and physical therapy as soon as possible.
Furthermore, Michelle recognized the importance of a particular hormone treatment for Colton. Boys with extra X chromosomes tend to skip a mini puberty, and therefore an extra mini surge of testosterone, that XY boys undergo. She described, “That’s a hormone that is believed to help whittle out cognitive skills, help the brain develop, and help with strength and motor coordination.” Because of their fortunate timing, they were able to mimic this mini puberty through a series of three testosterone shots over the course of three months when Colton was a baby. “A lot of kids are missing that window of opportunity to do that, so we were lucky.”
In light of these treatments and their timing, Colton has experienced less of the impacts that his condition can potentially have throughout childhood. Michelle explained, “He has not been impacted in the ways that we’ve seen for a lot of other kids with the syndrome, and I do credit that to the early diagnosis.” Besides struggles with social anxiety in school, which were undoubtedly amplified by the effects of the pandemic, she noted, “He has a lot of friends outside of school. So, he’s really kind of lived a normal childhood so far. I know his milestones are hit a little bit later, but really, he’s doing great.”
The making and mission of Colton’s Cause
Following Colton’s diagnosis, it became clear that the local region was incredibly accepting, creating a support system for Colton and his family. “What we’ve learned that wasn’t obvious to us before was how amazing our surrounding communities are, and how willing they are to help and support. It really is a unique area,” Michelle pointed out. “It really has been wonderful to see how incredible the community here is – accepting Colton and being his cheerleader – and knowing that we have so many people behind us, which ultimately will be the reason why he is so successful in the future.”
Unfortunately for many other families, this isn’t always the case, and the isolating effect that families can experience when their child has a rare disease or syndrome can be compounded by a lack of resources and a prevalence of inaccurate information. “You know, a lot of the support groups have blossomed in the last couple years, so back eight years ago when we first got his diagnosis there was really nothing out there as far as support,” Michelle noted. Luckily, Colton’s family was able to find a specialist in Maryland, where they brought Colton. At this point, Michelle explained, they felt super fortunate to have the ability to see a specialist and learn valuable information about Colton’s diagnosis, and thought, “Every parent should have the ability to do this for their child.”
Here, the wheels began to turn about what the family could do to help other children and families experiencing this same dilemma. They especially wanted to ensure that the many families in the local community with children who have a rare condition can find and access the care they need. “The rarer the diagnosis, the harder it is to find doctors, there’s nothing local, and less doctors know about it,” Michelle added. With this in mind, the mission of the non-profit foundation, Colton’s XXXtraordinarY Cause, was formed. Not only would they raise awareness and funds to help children with XY variations like Colton, but they would also “support and bring awareness to conditions that children in our community are faced with, and then raise money for the foundations supporting those conditions.”
The impact of the cause
Spreading awareness at a time when, as Michelle highlighted, there was little to no information out there about XY variations, was critical. Just by launching the non-profit and a website for Colton’s XXXtraordinarY Cause (coltonsxycause.com) meant that the organization came up in Google searches when parents started researching their children’s diagnoses. “I’ve had tons of moms from across the country and world – I’ve had moms reach out to me from Poland, and the UK, and all over the place, saying they stumbled across our website, they’re having trouble finding doctors that know anything – they’re looking for answers – they’re curious about how Colton is doing and what we’ve done for him. So, I’ve been able to help others that just couldn’t find the information out there,” Michelle explained. “In recent years, though, thankfully there have been more people who are coming out and sharing their stories. And I’m hoping that there’s a lot more awareness for it coming down the line.”
A Rare Affair
The other main effects of Colton’s XXXtraordinarY Cause are directly thanks to “A Rare Affair,” the nonprofit’s annual fundraising event. The original plan, Michelle described, was that rather than trying to raise funds all year, they would put on an annual gala-style event that prioritizes accessibility for all of those who want to support. Each year, a child with a rare diagnosis in the community would be honored. Half of the money raised in the event would be dedicated to the foundation that funds research, raises awareness, and provides support to families of children with the honored child’s diagnosis. The other half of the funds raised would go to the Focus Foundation, which funds research and provides support for families of children with XY variations. Raising funds for these foundations is especially important, Michelle noted, because there is no federal funding for researching these rare diseases and syndromes. “The only way to get research and cures and awareness is through the families that fundraise. All these foundations that I’ve mentioned that we raise money for, they all at one point in time were started by a family who had a child with the condition.”
A Rare Affair has been held at Globe Hill in Pine Plains, NY, donated to the foundation each year by Ronnybrook Farm. At past events, they’ve had live music, dinner, a silent auction, and dancing. In 2017, the first year of the event, Maddie Clements was honored. Over 350 people attended this event, raising $40,000, half of which was donated to the Focus Foundation, and half of which went to the Cure JM Foundation, which researches juvenile dermatomyositis (JDM), which is Maddie’s condition, and supports children with the disease.
In 2018, Aevary Kiernan was honored. Aevary was one of the first to be diagnosed with Tatton Brown Rahman Syndrome (TBRS), and half of the over $65,000 raised that year went to the Tatton Brown Rahman Syndrome Community, which Aevary’s family founded. Her mother, Jill Montgomery Kiernan, has done incredible work to raise awareness, bring people with TBRS together and provide support to them, and make information about this condition accessible.
The honorees for 2019, Dominick and Vincent Nasi, are twin brothers with their own distinct sets of rare diagnoses. Over $100,000 was raised that year, and to reflect the twins’ resilience and love of sports, half was donated to Special Olympics NY.
In 2020, Jim Jim Mulcahy was honored through an online event, a shift that was made because of the pandemic. With the move to a live virtual format, many people were recognized for donating items for an online raffle and sponsoring the event. Michelle emphasized, “That just goes to show how amazing the community is – people raised over $65,000 that year just having an online live event.” With this, half was donated to the Cure GM1 Foundation that supports research to find a cure for Jim Jim’s condition, GM1.
2021 brought uncertainty about planning a gathering, and with the help of Colton’s physical therapist, Colton’s XXXtraordinarY Cause was able to help a girl named Olivia who was born with sacral agenesis. Because of this condition, Olivia’s family consistently travels to see specialists, which has caused significant financial strain. To help, a friend of Michelle’s who sells athletic wear donated 84% of her profits, Crown Energy in Millerton, NY, (owned by Colton’s father, Erik) matched the donation, and a silent donor matched it as well. The result: over $20,000 raised that went directly to covering the family’s rent for a little over a year!
Looking to the future, Michelle hopes to reimagine and reinvent A Rare Affair. After the pandemic made planning for 2022 difficult, Michelle is considering what A Rare Affair will look like in 2023. The goal, she explained, is to continue having one main event each year and maintain the core of what A Rare Affair has been, but make little changes to adapt to the current situation. “We want our guests to not feel like they’re coming to something because they have to support it, we want them to really want to be there, too. If you want to be there, you’re going take the time to learn about these kids and their conditions. So, that’s really important to us, that it’s an event that people want to come to and support. And we’re hoping to get back there in 2023!”
How to help and get involved
Michelle stated it best: “The best way people can help is just teaching their kids that, ‘Hey, there’s kids that are different,’ and teaching them to be inclusive and accepting. They just want to feel like they’re part of something, too. I think that’s the biggest thing anyone can do for these kids right now.”
To get involved with Colton’s XXXtraordinarY Cause, learn more about past A Rare Affair events, and find more information about rare conditions, please visit www.coltonsxycause.com.