An Update on the Mandryk family
By Heather Walters
Port Dover has once again proven itself to be a caring, generous community.
Nearly three months ago, a local family found themselves between a rock and a hard place – their newborn son was fighting for his life, medical costs were mounting and despair began to replace fear.
Baby Ryder Mandryk was born with a rare defect of the larynx known as laryngomalacia. Essentially, Ryder cannot take food by mouth. When he swallows, food can enter his lungs instead of his stomach and he would aspirate. His breathing is laboured because his airway is constricted and acid reflux from his stomach bubbles up and burns his esophagus.
By last November Ryder had already undergone several surgeries, none of which were very effective. Parents Melissa and Josh had used their savings on medical supplies and treatments trying to keep their son alive. They were valiantly trying to negotiate the convoluted world of medical doctors, appointments and therapies on their own.
Slowly but surely they were running out of money, which meant they were running out of options.
Looking back, Melissa and Josh both agreed they were “in a state of denial” about the seriousness of Ryder’s condition and the costs, both emotionally and financially.
Eventually, the young couple began to realize they couldn’t do this on their own and with some urging from their family, appealed to the community for help.
They were completely unprepared for the overwhelming response from the community they have always been a part of.
Scotiabank set up a bank account so that local citizens could donate to Ryder’s cause. From that day forward, the Mandryk’s life changed completely. Their day-to-day struggle to pay rent and provide food for their two children has eased. They can now focus on finding a way to help Ryder.
Fast forward to mid February.
Ryder is no longer attached to a long feeding tube tied to an IV pole on wheels. He now sports a small baby-sized backpack that contains his food pack and pump system. Wherever he goes, so does his “lunch” and now that Ryder has learned to walk, this change has significantly improved his quality of life.
It also frees Melissa from following him around, untangling the line and pushing the IV pole. His earlier G-tube, which fed directly into his stomach, was replaced with a GJ-tube during one of his recent surgeries. Rather than feeding directly into his stomach, the GJ-tube goes directly into his small intestine, essentially by-passing the stomach altogether. Acid reflux had become a serious problem and by excluding the stomach completely from the digestive process, the doctors hope to alleviate this.
Ryder and his family have benefitted greatly by the outpouring of support from the community. They both admit they “were completely overwhelmed by the response. We never dreamt people would care so much or give so generously.”
Melissa has wanted to thank all the kind people who gave, and are still giving, so freely of their money, time or support, but says she didn’t even know where to begin. “I am so afraid I am going to leave someone out, because there were hundreds of people who helped us” she said. “I don’t even know where to begin.”
“The money that was collected at Scotiabank — and matched by Scotiabank — allowed us to purchase the backpack food pump and G-tube equipment Ryder now wears instead of a long line attached to the IV. That was life changing for all of us. I found it in the States and it was costly. We could never have done that without the help,” Melissa began.
“Next, the newly-recommended, specially prepared food packets that sustain Ryder are expensive. By Christmas time we were out of money. That would not have been an option for us. I really don’t know what we would have done.”
Dover Cliffs, where Melissa had been employed prior to Ryder’s arrival, sent over a complete turkey dinner at Christmas, also bringing gifts for the kids and gift cards for the parents. A neighbour just showed up with a tree and set it up. Santa Claus (who was it?) made a surprise appearance, delighting the kids and bearing gifts. “After the last surgery (in November) we had drained everything we had. That would have been it for us. And there was no way we could have given the boys a Christmas. I honestly don’t know what we would have done,” Melissa said.
Families both known and unknown to the Mandryks stopped by with baskets of food, necessities and gas cards. The Coffee Shop donated the proceeds from their volunteer Christmas dinner to Ryder’s cause. The Royal Bank collected funds in lieu of throwing a staff Christmas party. Northshore Runners brought gifts for the kids and donations for the parents. Port Dover KIA did the same. Bachman Law paid for a billboard in Simcoe that appeared during the month of January. It read “Help Ryder Get Better – Donate Today at Scotiabank”. Several private donors paid a month’s rent for the couple or anonymously bought “wish list items” like a baby monitor that Melissa says has changed everything for them.
“We used to have to take turns sitting with Ryder while he slept,” she said, “in case he stopped breathing. We never got to sit down together as a couple for even a minute.” Now the monitor displays his vitals on a screen she can take anywhere in the house.
Josh would particularly like to thank his boss, Ray, at Giles Marine. “He’s allowed me time off without question, and with pay. I can come home early if I need to or go in late. He has loaned us his vehicle at times so we could get to the hospital in terrible weather. His generosity has been remarkable. I am deeply grateful to him,” he said.
Neighbours pitch in whenever they can. Some provide respite for the tired parents or babysitting for Ryan, their 6-year-old son. Another drives Ryan to school every day. Rassaun Steel (and more specifically Vivian Saunders) collected boxes and boxes of food at their Christmas house party. Willaert Pharmacy continues to be a godsend for the family, ordering hard to obtain medical supplies, delivering when necessary and staying late to prepare medications.
The Legion, the Lions, the Ladies Auxiliary, the Women’s Institute and even the Post Office staff have all contributed to and made a difference for this family.
The Shiners’ Hospital has also come forward with a large donation and an offer of their medical facilities if another surgery or treatment is available through them.
With obvious emotion, Josh recalled an occasion where “one fellow saw that I was getting our car repaired, and he simply took care of the bill. I was completely blown away that someone would do that.”
The list goes on, and on, which is why Melissa was worried about leaving someone out. (If she has, please forgive her.) They even took time out to thank the Maple Leaf for getting their story out there.
“We must mention our friend, Michelle Beckett, who has been a singular driving force in fundraising and awareness since the very beginning. She is tireless in her efforts, doing yard sales, craft sales, and even a cookbook, raising funds for us. She is an angel,” they both agreed.
“It has been everyone in general,” Melissa emphasized, “hundreds of people, and not just donations of money either, but cards, facebook messages and notes of support. On a bad day, we can look at all those things and know we have help.”
The greatest gift of all, Melissa and Josh both agree, came as a surprise.
“For the first time since Ryder was born,” Melissa went on, “Josh and I felt like we weren’t in this alone. We tried so hard, for so long, to do it on our own. It was so hard. It became too hard. That has been the greatest gift of all, knowing our community understands what we are facing and is ready to lend a helping hand.”
The Mandryks don’t know exactly where they will go from here. There may be another surgery looming for Ryder. Shortly they will consult yet another specialist regarding possible throat reconstruction and/or a complete stomach bypass. Undoubtedly there will be difficult decisions to make, options to explore, successes and disappointments along the road ahead. The difference for this young family going forward is that they now know they aren’t in this alone. Port Dover has their back and that will make all the difference in the world.
As Ryder’s expenses are on-going, donations can still be made through the Scotiabank at account #908 520 002 224.