Published in the July 26, 2018 edition.

By MAUREEN DOHERTY

NORTH READING — In just four short weeks the McIntyre family will partake in their ninth running of the Falmouth Road Race, raising both funds and awareness of Sturge-Weber Syndrome.

The 42-member strong Sturge-Weber Team is running in support of the Sturge-Weber Foundation. 

RYAN AND PAM McINTYRE

“It’s hard to believe that we have raised a cumulative $595,000 over these years but it all adds up. This would have never happened without the continuous and generous support of family and friends,” said Pam McIntyre, who has run in each of the last eight races. This year, Pam will be joined by her husband Dan as they both participate in “Running for Ry” in honor of their son, Ryan, now 13, who has SWS.

She adds, “It’s simply impossible to express the depth of our gratitude. Without fail each year we are humbled and overwhelmed by your support. We feel so fortunate to have such an amazing village that continues to support Ryan and our entire family, day in and day out. Ryan truly is beginning to understand this.” 

Ryan and his twin sister Ava remain close as ever. He just completed seventh grade at the Cotting School while she completed seventh grade at NRMS. Both kids help mom and dad with the race organizing.

Being part of the Sturge-Weber Team provides Pam with an opportunity to share their journey and “to help those who aren’t in our day-to-day lives understand the increasing challenges Ryan faces as a young adult; to give a little insight as to what our year has entailed.”

“Our son Ryan was born with a port-wine stain birthmark covering his entire left eye and forehead. He was diagnosed at 6 months of age with Sturge-Weber Syndrome (SWS), a rare neurological disorder characterized by a facial port port-wine birthmark and serious medical conditions which include glaucoma, seizures and developmental disability.

“Ryan had his first seizure at 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.  And with great pride and relief we can say that Ryan has been seizure-free for 4 years and 9 months! Every day without a seizure is a true gift for our family.”

“After making some difficult decisions last year, Ryan has settled in nicely at the Cotting School in Lexington,” she said.

“Ryan took the middle school chaos in stride.  His perspective was and continues to be astonishing.  He is doing so well.  Astoundingly well.  Cry tears well.  He is making slow but unmistakably steady progress, which is so much more than we had let ourselves hope for in the days following the emergency meeting.  Ryan has acclimated seamlessly into the Cotting School. He loves it.  They truly love him.  He belongs.   We can see it.  Our emotional and quite painful journey led us to a very special place.  A place where Ryan is not only welcomed, but needed.  A place, like our home, where the value he adds dwarfs the challenges that his SWF brings.  Once again, Ryan has absolutely become our teacher, and he has turned us into the people/the parents that we were meant to be.”

But she explains, “Ryan’s struggles are real, and we face them every day.  Reading is still so hard.  And simple math might as well be a foreign language.  Thinking about the future, and an independent life for Ryan, are still daunting.  So we try to take each day as it comes.  We know that every parent’s Plan A for their child is not an option for Ryan – but he sure is kicking the butt out of Plan B.  We consider ourselves fortunate to be where we are today,” she adds.

This year, Pam and Dan’s personal fundraising goal is $20,000 and they have just passed the $8,000 mark so the push is on in the final four weeks in advance of the seven mile road race on Sunday, Aug. 19 along scenic Falmouth Harbor.

The McIntyres have also decided that this race with be their second to last so they will be hanging up their sneakers after the 2019 race after the family will have participated in it for 10 consecutive years.

Since SWS affects so few people it is one of the orphan diseases that does not receive much funding support for research or supportive family services. Changing this dynamic was among the obstacles Pam sought to overcome during her many years as the chairwoman of the SWF. She is presently one of eight emeritus members of the SWF’s Board of Directors.

Due to the advocacy of the McIntyres and other families affected by SWS, thankfully, the tide is beginning to turn, both here and nationwide.

The Sturge-Weber Foundation’s motto is: “We exist to improve the quality of life and care for people with Sturge-Weber Syndrome and associated port wine birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness. 

Many years ago, Children’s Hospital in Boston, where Ryan has received treatment since infancy, published a feature on Ryan’s story to chronicle what it is like to live with SWS. The link to that story is here: https://children’s hospital blog.org/living-with-sturge-Weber-syndrome-Ryan’s-story./.

To donate online to Pam and Dan’s race efforts, please visit www.firstgiving.com/fundraiser/pam-mcintyre/2018-TeamSWF-Falmouth-Road-Race?mid=8wZgAA2