{ "blocks": [ { "type": "paragraph", "data": { "text": "Meet Poppy Roy-Smith." } }, { "type": "paragraph", "data": { "text": "When Poppy was born on June 5, 2021, she was healthy and happy like any other baby. Looking back, there were signs that something was different as early as eight weeks, but parents Kaitlin and Peter never wanted to measure Poppy's development against her older sister, Daphne, because every child's growth is unique. It was not until the one-year mark, when Poppy began missing expected developmental milestones that their concern grew. " } }, { "type": "image", "data": { "file": { "url": "https://thehockeynews.com/.image/c_fit,h_600,w_600/MjEyODMxNjcxNzU2NTMxMjA5/pxl_20230423_071646670-1.jpg" }, "caption": "Kaitlin and Poppy enjoy some story time (Image credit: Roy-Smith family)" } }, { "type": "paragraph", "data": { "text": "The Roy-Smiths booked an appointment with their family doctor, who referred Poppy to a developmental pediatrician. After a battery of tests, the pediatrician gave Poppy an initial diagnosis of a global developmental delay - a term used to describe children who experience delays in more than one area of development. While Poppy excelled in social development testing, she lagged in motor skills, speech, cognitive and emotional development. " } }, { "type": "paragraph", "data": { "text": "The question was, why?" } }, { "type": "paragraph", "data": { "text": "In an effort to find the answer, Poppy's pediatrician enlisted her for every test imaginable, including an appointment with a geneticist who advised getting Poppy into a genome sequencing program. The problem with the program is that space is limited because of its associated costs, making it widely inaccessible. It also features a lengthy waiting period to not only get admitted but also get results. To expedite the process, the geneticist filled out forms describing Poppy's facial features, muscle tone and distinctive rigidity. Once everything was submitted, the Roy-Smiths were encouraged to get more blood testing while waiting six to 12 months for their genetic results." } }, { "type": "paragraph", "data": { "text": "On cue, the Roy-Smith family received a phone call from CHEO in January to schedule a virtual appointment for February 22. It was a day the family will never forget. " } }, { "type": "paragraph", "data": { "text": "\"Initially, we thought they wanted to do a virtual one because there were no significant findings,\" Kaitlin recalled. \"(We believed) whatever they found was going to be very minimal.\"" } }, { "type": "paragraph", "data": { "text": "The tone changed immediately when their geneticist appeared on the screen." } }, { "type": "paragraph", "data": { "text": "\"She just said, 'I have no idea how to tell you guys this. I've never even heard of this,' Kaitlin detailed. \"She wasn't a geneticist who was on the job for two years. She was older, experienced and had seen things." } }, { "type": "paragraph", "data": { "text": "\"She said, 'I've never even heard of this. I did find there's one other person in Ottawa who got diagnosed with it, but other than that, it's very rare.\"" } }, { "type": "paragraph", "data": { "text": "Poppy was diagnosed with a beta-propeller protein-associated neurodegeneration (BPAN) disorder - an extremely rare type of neurodegeneration brain iron accumulation (NBIA) that has an estimated 500 to 2,500 cases worldwide." } }, { "type": "image", "data": { "file": { "url": "https://thehockeynews.com/.image/c_fit,h_600,w_600/MjEyODMxNzg1MDM2MjkzNjQx/pxl_20220912_201122337.jpg" }, "caption": "" } }, { "type": "paragraph", "data": { "text": "Children with BPAN typically experience developmental delay, speech impairment, seizures, and make slow cognitive gains. As a progressive disease that damages the nervous system, when these children reach early adulthood, they are faced with a devastating sudden onset of regression. These individuals often develop progressive Parkinsonism, cognitive decline, and dementia - causing them to lose many of the gains they experienced through therapy in their childhood." } }, { "type": "paragraph", "data": { "text": "\"(The geneticist) gave us the diagnosis and gave us the information that she had,\" Kaitlin explained. \"There were only two papers about it; that was the only information there. It was harsh.\"" } }, { "type": "paragraph", "data": { "text": "BPAN was placed under the NBIA umbrella in 2012, making it a rare disease in its relative infancy of discovery. These factors combine to make any BPAN diagnosis heartbreakingly straightforward: very little funding and research have occurred to work towards a solution. There is no cure." } }, { "type": "paragraph", "data": { "text": "The Roy-Smiths had a follow-up appointment two weeks later. They spent that time grieving." } }, { "type": "paragraph", "data": { "text": "\"We cried,\" Peter said, describing the process. \"Yeah, there was a lot of that. There was a lot of grieving for a future that we expected to have. Every parent would have these notions of, 'My kids gonna grow up, and they are going go to school, and (eventually move out).'\"" } }, { "type": "paragraph", "data": { "text": "\"Daphne was already skiing at the time,\" Kaitlin added. \"We want (Poppy) to learn how to ski like Daphne. We want her to do this so Daddy and the girls can go skiing and little things like that." } }, { "type": "paragraph", "data": { "text": "\"And then, in the bigger picture of what our retirement would be and all the places that we wanted to go, and just very quickly realizing, 'Oh wow, we might not be able to do those things.'\"" } }, { "type": "paragraph", "data": { "text": "That realization and the news that their daughter's health would deteriorate at some undisclosed point in the future was devastating and hard to process. The family began doing their own research on the disease and joined the 'BPAN family' Facebook group, but it was not until the family travelled to the Children's Hospital of Philadelphia (CHOP) in January of 2024 that the family's outlook began to improve." } }, { "type": "image", "data": { "file": { "url": "https://thehockeynews.com/.image/c_fit,h_600,w_600/MjEyODMxNDYxMzAzMTMzODI0/pxl_20240229_1306476082-1.jpg" }, "caption": "The Roy-Smith family model their matching \"Care for Rare NBIA Disorders\" hoodies. (Image credit: Roy-Smith family)" } }, { "type": "paragraph", "data": { "text": "The CHOP has a specialized program within its Neuroscience Centre that specializes in BPAN and NBIA-related disorders, and its doctors were the ones who authored the research paper that the family's geneticist referenced when providing the family with Poppy's original diagnosis." } }, { "type": "paragraph", "data": { "text": "There, the Roy-Smiths met other families affected by the disease and received encouraging news. The specialists acknowledged that their research paper focused on severe cases of BPAN and that, over time, more cases emerged that were not as harsh. There was a larger spectrum of cases than was initially realized, with some individuals living into their 40s." } }, { "type": "paragraph", "data": { "text": "\"Hearing there was more of a spectrum was when it became less scary and less like dark and cloudy,\" explained Kaitlin. \"You saw that there are kids who can grow older and have wonderful (experiences) participating in things like the Special Olympics.\"" } }, { "type": "paragraph", "data": { "text": "An unanticipated challenge was for the family to manage their expectations." } }, { "type": "paragraph", "data": { "text": "\"It is probably the hardest part,\" Peter admitted. \"We want to raise her as best as possible and (give) equal (time) between Poppy and Daphne." } }, { "type": "paragraph", "data": { "text": "\"We do have to spend a lot more time with Poppy, taking her to therapy or an activity. We do want to share our time with Daphne, too. Having an expectation of, 'Yeah, we can (share our time) 50-50,' is hard. It's very, very, very difficult to do that.\"" } }, { "type": "image", "data": { "file": { "url": "https://thehockeynews.com/.image/c_fit,h_600,w_600/MjEyODMxNTI5NDg1NzM5NTI5/pxl_20230511_142259028.jpg" }, "caption": "Peter, Daphne and Poppy (Image credit: Roy-Smith family)" } }, { "type": "paragraph", "data": { "text": "Over the last year, the family's life has evolved. Their eldest daughter, Daphne, is five years old and currently enrolled in senior kindergarten at a public school in the city's west end. Poppy attends daycare in Carp, where she regularly receives visits from her CHEO therapist to assist her development and learning. Kaitlin has continued her work as a dental hygienist, while Peter is a full-time firefighter with the City of Ottawa." } }, { "type": "paragraph", "data": { "text": "Poppy's therapy varies from week to week, but it is common for her to see specialists twice a week. She requires Botox bi-annually to help with her saliva management, but one of the challenges the family has faced is that Poppy's speech development is delayed. For example, when Poppy has an optometry appointment, she cannot communicate messages like, \"Mom, I can't see the words or letters in this book,\" or, \"Mom, the picture on the television is blurry.\"" } }, { "type": "image", "data": { "file": { "url": "https://thehockeynews.com/.image/c_fit,h_600,w_600/MjEyODMyNTAxNzU5NDIwMDMy/pxl_20231003_154504427-1.jpg" }, "caption": "Kaitlin and Poppy (Image credit: Roy-Smith family)" } }, { "type": "paragraph", "data": { "text": "Peter estimates that Poppy has two or three words that outsiders can identify but believes there are closer to 10 to 20 words that he and Kaitlin can identify. Poppy is seeing a speech pathologist, but the family also relies on sign language and an 'augmented accessible communication' (AAC) app on their iPad called 'TouchChat' to communicate with their daughter. Compounding the problem is that rare diseases, like BPAN, receive very little funding for research and treatment. Similarly, the insurance coverage is not as extensive." } }, { "type": "paragraph", "data": { "text": "\"There are always conversations with insurance companies trying to get stuff covered that you know might not be covered regularly for a little kid,\" Peter said while describing the common hurdles they face. \"Or, it is not a standing coverage thing because we're not using it like an older medical thing. Those are always fun battles with insurance.\"" } }, { "type": "paragraph", "data": { "text": "With more common diseases, there is also more government monetary support, which for families in the Roy-Smith's situation, puts almost all the financial pressure on the directly impacted families themselves. " } }, { "type": "paragraph", "data": { "text": "It adds an extra layer of stress that no family needs or deserves. From the escalating fuel costs associated with driving Poppy to therapy to weighing whether to invest in more therapy sessions or specialized equipment to help her progress, constant financial considerations must be made. Even regarding extracurricular activities, there is a realization that Poppy often cannot participate in classes with regular children. Activities for children with disabilities require more supervision and, with it, increased costs." } }, { "type": "paragraph", "data": { "text": "There have been instances of support." } }, { "type": "paragraph", "data": { "text": "Peter also works for an arborist company. One day, the company and its employees donated all their revenue and salaries from a day's work to help cover some of Poppy's treatment and expenses." } }, { "type": "paragraph", "data": { "text": "His colleagues within Ottawa Fire Services have organized the inaugural Poppy's Path Gala, which will be held on Saturday, February 22, at the Brookstreet Hotel in Kanata. The evening's events will feature live music, a 50/50 raffle, and a silent auction. All proceeds from the event will donated to NBIADisorders to support research for BPAN and to help support families impacted by the disease." } }, { "type": "image", "data": { "file": { "url": "https://thehockeynews.com/.image/c_fit,h_600,w_600/MjEyODMxOTIzMjgwNTUzNDgx/pxl_20230108_150011690.jpg" }, "caption": "Poppy and Daphne visit Dad at work. (Image credit: Roy-Smith family)" } }, { "type": "paragraph", "data": { "text": "\"The best way to look at firefighters is we're used to fixing things,\" Peter said with a smile. \"Everyone wants to help and do something, and when something is challenging to fix, what better group of people to come up with a solution?" } }, { "type": "paragraph", "data": { "text": "\"The (Gala) was first thought about at this time last year, but the turnaround time was too short to make it work, so we shelved it for a year. When picking a date, I looked at the 22nd for a few different reasons. It's the anniversary date of Poppy's diagnosis, and it also puts it about a week before Rare Disease Day." } }, { "type": "paragraph", "data": { "text": "\"The whole fire department has really jumped on board to help them make this work. It's just people want to do something to help. That's the way the fire department works.\"" } }, { "type": "paragraph", "data": { "text": "Ottawa Fire Services is not the only organization that jumped on board to offer support. After learning of Poppy's story during the Christmas holidays, Ottawa Senators team president Cyril Leeder immediately contacted Senators Community Foundation (SCF) president Jacqueline Belsito and its director of events and fundraising, Jennifer Cameron." } }, { "type": "paragraph", "data": { "text": "Within two weeks, the Poppy's Path Gala organizers and the Roy-Smith family met Belsito and Cameron privately before the Senators' January 16th game against the Washington Capitals to discuss what the SCF could do to amplify Poppy's story." } }, { "type": "paragraph", "data": { "text": "The decision to get involved with Poppy's Path was easy for Belsito." } }, { "type": "image", "data": { "file": { "url": "https://thehockeynews.com/.image/c_fit,h_600,w_600/MjEyODMyMTAyNTk1NDM4MDg5/received_1453152368826305.jpg" }, "caption": "Kaitlin and Poppy (Image credit: Roy-Smith family)" } }, { "type": "paragraph", "data": { "text": "\"When you meet kids like Poppy and (Daphne), they steal your heart, right?\" Belsito acknowledged. \"I'm personally very privileged to be in a role where I can advocate for people." } }, { "type": "paragraph", "data": { "text": "\"I can help raise money, I can help give money, but I'm just an ambassador. It's the whole organization that cares. When you meet kids like Poppy, they stick with you. You meet the parents and better understand what people are unfathomably going through, how resilient they are and how joyful their life is despite the obstacles.\"" } }, { "type": "paragraph", "data": { "text": "While the SCF cannot give money to the Roy-Smith family directly for their personal use, the organization wants to use its platform to amplify the family's story. " } }, { "type": "paragraph", "data": { "text": "\"We can shine a light on the importance of what a family is going through, or the health struggles that Poppy is going through, or the financial struggles, so that people can pay attention because somebody's suffering in the community, and that's like, where our heart is is, how do we do good in the community?\"" } }, { "type": "paragraph", "data": { "text": "\"It is about helping hockey fans, for sure, but also opening up our eyes to the incredible challenges of families with kids with rare diseases." } }, { "type": "paragraph", "data": { "text": "\"That is so complex, and the care model is so complex that if we can help others, in any way, to understand the complexity of that (it is our duty). If you haven't gone through it, you have no idea. And that's one of the beautiful things about our community. If more people know about (BPAN), then people are willing to put up their hand and help. So, if we can help in that small way to rally the community, then that's something that's really motivating for us.\"" } }, { "type": "paragraph", "data": { "text": "In the past several days, the SCF has used social media to raise awareness of Poppy's story." } }, { "id": "pwersgy1-p99t8mr1", "type": "embed", "data": { "service": "twitter", "source": "https://twitter.com/SenatorsFndn/status/1887555663523401814", "embed": "https://platform.twitter.com/embed/Tweet.html?id=1887555663523401814", "caption": "" } }, { "type": "paragraph", "data": { "text": "One of the motivating factors towards working with the Senators is the work that the 'Don't Forget Morgan' foundation has done with the Detroit Lions and the NFL." } }, { "id": "l9jf4sf6-91565eqa", "type": "embed", "data": { "service": "twitter", "source": "https://twitter.com/Lions/status/1498297435881418764", "embed": "https://platform.twitter.com/embed/Tweet.html?id=1498297435881418764", "caption": "" } }, { "type": "paragraph", "data": { "text": "\"From our first email conversation with Jacqueline (Belsito) and Jennifer (Cameron), they've provided us with a lot of support,\" said Peter appreciatively. \"They have provided us with a lot of support. It's the best way to start it, basically saying we can do this, and they're there (as an extensive resource) for us." } }, { "type": "paragraph", "data": { "text": "\"They've hooked us up with great silent auction items and were awesome with our girls at our first in-person meeting. They hooked them up with some Spartacat VIP swag, including some signed photos. They've got two Sens fans for life out of those girls." } }, { "type": "paragraph", "data": { "text": "\"When it comes to the future of our next event, (the SCF is) going to be on board very early, and we'll be able to build (next year's gala) up even more. In the week leading up (to the event), they've got more stuff planned, and it will get the message out about BPAN.\"" } }, { "type": "paragraph", "data": { "text": "Beyond the SCF's contributions, the hockey community's response has been fantastic. The Washington Capitals, Boston Bruins and Toronto Maple Leafs generously donated autographed merchandise for silent auction -- including an autographed Alex Ovechkin jersey." } }, { "type": "paragraph", "data": { "text": "The response has been overwhelming, but it is not a surprise the hockey community and the Ottawa Senators have stepped up to help." } }, { "type": "paragraph", "data": { "text": "\"Poppy is now part of our extended family,\" said Belsito. \"We know how involved the firefighters are, and firefighters are part of our frontline supporters and part of our family. They help us, and now, we are helping one of them. We don't know where it's gonna go, but we're family now.\"" } }, { "type": "paragraph", "data": { "text": "Public donations can be made to Poppy's Path following this link. You can follow Poppy's Path on Instagram at instagram.com/poppyspath2021/" } }, { "type": "image", "data": { "file": { "url": "https://thehockeynews.com/.image/c_fit,h_600,w_600/MjEyODMwODkxNjgzMDk2MDcz/pxl_20240712_125958452mp.jpg" }, "caption": "Image credit: Roy-Smith family)" } } ] }

Ottawa Senators Community Foundation Teams Up With Local Firefighters For 'Poppy's Path' Gala To Support Research For Rare Disorder