$466,000 raised to date for Sturge-Weber Syndrome support
Published in the August 10, 2017 edition
Editor’s Note: Due to a production error, the complete version of this story did not appear in print. Read the full version here.
RYAN McINTYRE, 12, proudly displays the Courage Award he was presented by the Cotting School for “his positive and outgoing attitude upon entering a new school.” (Courtesy Photo)
By MAUREEN DOHERTY
NORTH READING — The Macs are back… and they’re as inspiring as ever!
The McIntyre family — Pam, Dan, Ryan and Ava — is continuing its quest to raise funds and awareness of an orphan neurological disease that afflicts just a few thousand people worldwide: Sturge-Weber Syndrome.
The North Reading family’s venue of choice for this mission is the Falmouth Road Race, which takes place in just 10 days on Sunday, Aug. 20. Pam will be running the race that attracts world-class athletes for the eighth consecutive year on behalf of the Sturge-Weber Foundation (SWF), a nonprofit organization on which she has served as chairwoman for the past three years and as a board member for six years.
At the race and throughout the year-round fundraising effort, Pam is supported in this endeavor by her husband Dan and the couple’s twins, Ryan and Ava, who are now 12 and just finished their first year of middle school, as well as a small army of loyal supporters.
Ryan, who was born with a port-wine stain birthmark covering his entire left eye and forehead, was diagnosed at 6 months old with Sturge-Weber Syndrome (SWS), a rare neurological disorder characterized by a facial port-wine birthmark and serious medical conditions. These conditions include glaucoma, seizures and developmental disability.
But Ryan has never let SWS get the best of him. He has a heart of gold, a smile that melts hearts, and a desire to always do his best despite his medical challenge. He had his first seizure when he was just 9 months old.
“We feel fortunate that Ryan’s seizure activity has been relatively well controlled through a significant dosage of anticonvulsants, with a few exceptions – most recently in the fall of 2013. Ryan has been seizure-free for 3 years and 8 months! This is the longest period in his life that he has gone without any seizure activity,” Pam happily acknowledged on her fundraising page.
“There is no cure for SWS and no 100 percent effective way of preventing seizures. We live our lives waiting for Ryan’s next challenge. Ryan will live with a lifetime of seizure risk, glaucoma and always be challenged by his learning disabilities. So therefore, we live every day trying to do what we can to support him and keep him well,” Pam stated, adding, “Raising money and awareness for this orphan syndrome is just one small way that we gain control over SWS: It allows us to contribute toward a brighter future for children afflicted with SWS.”
Closing in on half-million dollar mark
Over the past seven years, the SWF team has raised $466,000 through a network of 4,731 donors (and counting) and 82 different runners.
The support has grown exponentially each year. In 2010, the first year Pam ran Falmouth along Jessica Melo, with another mom whose son has SWS, they had just five bib numbers. In the 2017 race, there will be 42 women and men running on behalf of the SWF, including nine newcomers.
In addition to Pam and Jessica, the “honor roll” of runners who have tackled the Falmouth course on behalf of SWF includes: 7 years: Kevin Melo; 6 years: Chris Marino; 5 years: Jonathan Desmarais, Charlene Johnson, Ellen LaMarche, Octavio Melo and Michelle O’Connor; 4 years: Nancy Carpenter, Ellen LaMarche, John O’Day, Kate Sanders and Jamie Trickett; 3 years: Julie Brady, Mike Collins, Brent Crouch, Woody Crouch, Coralee Craig, Rob O’Neill, Deb Shea and Heather Wicken; 2 years: Melanie Arena, Kim Auen, Mark Banks, Jen Barbato, Nick Carpenter, Nina Conway, Carol Di Pietro, Olivia Melo, Peter Sullivan and Dan Torgerson, as well as newcomers: Kunal Bhalla, Kym Fischer, Lynn Hannan, Chris Karavolas, Adam Lavelle, Leah McCann, Kait Roweton, Ryan Sfreddo and Kate Tiberio.
“Each and every year we are overwhelmed and beyond humbled by the incredible support and generosity that we experience during our journey. Expressing the depth of our gratitude is almost impossible. Our amazing and far reaching community has embraced us in every way. You have shown us true friendship and love, and with your help we have come to see that we are never alone. Knowing this is what gets us through our more challenging moments,” added Pam.
“Each year as Ryan’s parents brings new challenges, triumphs and unexpected hurdles. This year was no exception. In fact, despite the blessing of another ‘quiet’ medical year, we faced probably the most significant emotional challenge yet. We were forced to make decisions about Ryan’s care, his education, and his future far sooner than we anticipated,” Pam recounted.
“After six years in the North Reading school system and a hopeful start to middle school alongside his sister, the painful and heartbreaking reality presented itself that Ryan’s unique profile could no longer be supported by traditional public school. Despite our vigorous efforts and advocacy, and many attempts to create an environment where Ryan could thrive, we ultimately were faced with the need to place Ryan elsewhere. This was enormously painful to us, to Ava, and especially to Ryan,” she explained.
“Our search was not an easy one. Finding a school in which Ryan could grow academically but also find a supportive peer group and a collaborative environment was difficult. Who Ryan is on paper, and who Ryan is in person are very different. We understand that well in our family, but figuring out a way to translate that to a potential school community was a challenge,” she recalled.
Their search lasted six months, involved dozens of schools and admittedly, had a few “painful false starts” before the right fit for Ryan was found.
“As parents, we will never, ever lose hope in our son’s ability to grow, to achieve, and to defy expectations. And in the Cotting School, we found a place where they share that hope. Ryan began at Cotting in April, and is enjoying it very much,” Pam said.
In fact, in June, Ryan earned the school’s Courage Award for successfully making the transition to his new school.
“Ry has taught us so much more than we will ever teach him. His diagnosis has improved me as a person tenfold. It has opened up a whole new world for me, shown me how beautiful and generous the human spirit can be. As cliche as it sounds, I know that Ryan’s diagnosis gives us true purpose,” Pam said. “We constantly strive to live up to the privilege of having Ryan Joseph McIntyre as our son. And if you know us, you know that the blessing of Ryan has also taught us that nothing is too small to celebrate!”
Ryan has received excellent care at Boston Children’s Hospital and his story is featured on the hospital’s blog. To read his story, go to: https://thriving.childrenshospital.org/living-with-sturge-weber-syndrome/
To learn more about the Sturge-Weber Foundation, visit www.sturge-weber.org.
And, to support Pam’s team financially, visit her fundraising page at: https://www.firstgiving.com/fundraiser/pam-mcintyre/2017-swf-falmouth-road-race
