by Len Lear
Starting this Thursday and continuing through Friday and Saturday, April 23 to 25, Scarlet Begonias, 1512 Bethlehem Pike, and Barbara B’s Jewels, 1501 Bethlehem Pike in Flourtown, will host “Shop for a Cause,” in which a percentage of gross profit from sales will be contributed to the Montgomery County Down Syndrome Interest Group (MCDSIG) and the Trisomy 21 Program at Children’s Hospital of Pennsylvania (CHOP).
On Thursday evening April 23, until 8 p.m., Dr. Michael Rubenstein from CHOP’s Neurology Program will be present to answer questions. On Friday April 24, Dr. Symme Trachtenberg, director of community education at CHOP, will be present, and on Saturday April 25, Dr. Mary Pipan, director of the Trisomy 21 program at CHOP, will be at the stores. All three guests will offer insight into Down Syndrome and recent medical advancements. Refreshments will be available on Thursday from 4 to 8 p.m.
There are two local individuals far apart in age who have Down Syndrome and who have touched these two Flourtown businesses. One is Logan, a 3½-year-old boy, and the other is a 37-year-old woman named Elyssa.
The funds raised during Shop for a Cause will benefit the Learning and Literacy Program as well as family inclusive activities for MCDSIG and will be used by CHOP to cover shortfalls in medical expenses for families that are involved with the Trisomy 21 Program.
Logan is the son of Doug and Karyn Buchanan, of Flourtown. Following is an edited version of a prepared statement from Karyn about her son: “My son Logan is an active, smart, happy and loving 3½ year old. He attends pre-school, loves Monsters University, anything with guacamole (seriously!) and adores his brother and sister. Logan also has Down Syndrome, also known as Trisomy 21 (three copies of chromosome 21 instead of the usual two). Down Syndrome is part of his genetic makeup, just like his gorgeous blue eyes and sandy blonde hair.
“His days are filled with the same things that any 3-year-old would do, but it is usually a lot more challenging for him to accomplish these tasks. Logan has already had years of physical therapy, occupational therapy, feeding/sensory therapy and speech therapy. We mix these therapies in with all of our ‘ologist’ visits, as we call them. Logan sees specialists to follow different health issues we have dealt with so far, and he still needs cardiac surgery to repair a heart defect within the next year or two. We have had ENT surgery (twice), eye surgery and a few ICU stays that have had us scared out of our minds.
“This is all a lot of hard work, a lot of waiting, a lot of patience, a lot of doctor visits and a big toll on a family. But through it all, Logan’s personality shines. He waves in elevators, blows kisses in doctor offices and runs happily into school after a quick kiss. Most days he doesn’t even look back at me. However, he is not always happy! There is a generalization that individuals with Down Syndrome are always happy, and they absolutely can be happy, but they also get mad, grumpy, tired and frustrated, just like the rest of us…
“The support we get from extended family and friends is what makes it all doable. And his little voice that is so sweet when he is not screaming like Sully and Mike from his favorite movie! That voice uttered his first three-word sentence just last night. He said it with no verbal prompts from me but just a small visual cue of me pointing to my eye. I. LOVE. YOU! And we did it over and over all night because LOVE is really what it is all about. And, boy do I love hearing that being said in his voice!”
Elyssa is the daughter of Robert and Judy Weisman of Wyndmoor, who provided us with this prepared statement: “Our daughter Elyssa was born in 1977 and has faced many physical and developmental challenges over the past 37 years. She has done this with moaning and groaning and smiles. We have learned to navigate the ‘mine field’ of special education, medicine and social activities. Although this hasn’t been easy, we have formed lifelong friendships with other parents of children with Down Syndrome and have a great support system.
“I have seen many advances since our daughter was born. She is already benefitting from these advances, but we are finding that now that our children are adults and are over the age of 21, there may be activities and help out there, but the routes to these resources are hard to navigate. We all need to come together and share our knowledge so that there is an organized resource system available when questions arise.
“Part of this resource system was made evident to us over three years ago when my daughter suffered from neurological deficits. We were lucky enough to get her enrolled in the Trisomy 21 Project at CHOP. We continue to receive excellent care and have come to know and respect all those associated with the program.”
More information about MCDSIG at www.mcdsig.org. Scarlet Begonias can be reached at 267-682-0839, and Barbara B’s Jewels at 215-233-2522.