5,000 Words about My Website
This is the report that I submitted to judges at the Future Problem Solving International Competition. The document goes into depth about every action I took to complete this project.
Area of Concern: My older sister, Blair, was diagnosed with Sanfilippo Syndrome at age six. Sanfilippo, also known as MPS III, is a rare terminal illness that took away Blair’s ability to walk, talk, and care for herself. I was only four years old at the time of her diagnosis, and as I grew older, I began to understand the terrifying fate of my only sibling. Blair passed away in April of 2017 when I was 13 years old. I was fortunate enough to have an incredible support system of not only friends and family, but also other siblings in a similar position. I had the opportunity to meet several Sanfilippo families on their visits to Orlando for Make-a-Wish trips and conferences. As a result of these connections, in the months after Blair’s passing, I had the opportunity to speak with siblings of terminally ill children who understood exactly what I was going through. These relationships were incredibly helpful during my grieving. Unfortunately, not every sibling who endures such a life-altering loss has an effective support system. My research shows that although there are many support programs for parents of sick children, there is a lack of support for siblings. A 2010 study in the Journal of Pediatrics & Child Health of 109 major pediatric hospitals in the United States and Canada found that only 48 percent provide sibling support. The loss of a sibling can have a long-term impact on children’s development and emotional well-being. A study by researchers Jan-Louise Godfrey and Roger Cook, detailed on Psychlopedia.org, found that adolescents who have lost a sibling often experience trauma associated with the loss as well as a sense of disenfranchised grief. Often, the intensity of their grief may not be recognized by other people or may be seen as lesser than that of their parents.
These studies emphasize the need for more sibling support programs, globally, in the terminal illness community. Even families who are fortunate enough to live near a hospital that provides sibling support may not have their child treated there full-time, and therefore would not be able to reap the benefits of its sibling support programs. Other facilities which offer sibling support, such as grief centers and not-for-profits, may not have programs that are accessible to all families. Most terminally ill children need care 24/7, so their parents will likely not have time to drive their other child to and from one of these facilities. Siblings of the terminally ill need a convenient, low-cost and accessible support program to help them withstand the challenges they face each day.
Challenges identified from my perspective, as a sibling of someone with a terminal illness:
Siblings are often ignored due to lack of awareness about the challenges they face.
Their parents’ emotions and grief are seen as more significant.
This lack of awareness can cause siblings to hide their emotions.
Professor David Balk, who has done extensive research on sibling loss, states, “One of the common messages for adolescents whose siblings have died is they have to camouflage their feelings.”
Since support is usually not offered to siblings, sometimes they feel like they are alone in their grief and struggles. They do not know who to talk to because they feel as if nobody will understand.
Challenges identified from a parent’s perspective:
Parents of the terminally ill are always occupied, taking care of their sick child and trying to make him/her as comfortable as possible.
Because siblings don’t feel like it is necessary to speak up about their challenges, the parents are not aware that they need more attention.
Challenges identified from a doctor/therapist’s perspective:
Doctors who are focused on a patient’s needs do not see siblings as a priority.
Siblings may not feel comfortable opening up to a stranger, like a therapist, about their emotions.
Long-term challenges identified:
Not surprisingly, research has found that preteens who had lost a sibling had higher anxiety and depression levels than those who did not. They also had more attention problems, likely a result of their disrupted routines.
Adults who lost siblings as kids also recall feeling as if their own emotions don’t matter, what the family therapist Pauline Boss calls “ambiguous loss,” or loss without closure. Others have labeled it “hidden grief.”
Challenges that may arise in the process of creating a resource for siblings:
If the resource requires siblings to travel to a grief center or hospital, their family may not be able to get them there due to their brother or sister needing 24/7 care.
If siblings must share information about their brother or sister’s health, this raises concerns about privacy and HIPAA, United States legislation that provides data privacy for safeguarding medical information.
Underlying Problem: Since there is a lack of mental, emotional, physical, and social support for siblings of those with a life-threatening or terminal illness, how might we provide an accessible support system for siblings, globally, so that this access allows them the opportunity to express the challenges they all face in 2017 and beyond?
Alternative Solution Ideas:
After completing research and analysis in the last section, I now have several requirements which will help me form an effective plan to support siblings. These are several solution ideas to support siblings that I considered:
Sibling-led support group (Starts in Orlando: I lead the group myself)
Concern: organization and training other siblings to lead groups around the U.S.
Siblings visit other siblings at hospitals to raise their spirits & keep them company
Concern: Siblings who are not often in hospitals, like me, will not have access to this support. Siblings whose brother or sister has passed away will also not be in hospitals.
Concern: Security issues arise when letting strangers visit children in a hospital.
Social Media App
Concern: Siblings in need may not have access to social media
Partner with Courageous Parents Network (a parent support website) to add sibling section
Concern: A combined support site with parents would not be appealing to siblings.
Write a book about my experiences as a sibling and give advice for siblings to read
Concern: Costly to publish and costly for siblings to purchase
Send care packages to siblings around the world to raise their spirits and help them grieve
Concern: too costly, security issues for delivery
Organize Skype calls with siblings from around the world
Plan of Action: My project is a support website for siblings of children who are terminally ill or have passed away. The website allows siblings to write blogs, share photos, and express their emotions while connecting with others who share their experiences of grief and trauma. It also aims to share stories so siblings will feel less alone in their emotions towards their brother or sister’s situation. After considering other ways to support siblings, which are mentioned above, I made the decision to create a sibling support website in July of 2017, just four months after my sister passed away. This was the most accessible, safe, and effective way to support siblings out of all solutions I considered. Within the next month, I received feedback from family, friends, and teachers, along with choosing a name. The website is called The B.L.A.I.R. Connection. B.L.A.I.R., my sister’s name, is also an acronym for Brave, Loving, Amazing, Inspiring, Relentless. While many are aware that terminally ill children have these traits, their siblings are often overlooked. Siblings of the terminally ill have these characteristics as well and need support to overcome the challenges they face. I added “Connection” to the name to represent one of the website’s most important goals which is connecting siblings.
In the next several months of 2017, I will email, call, and meet with anyone who can give me feedback on this idea. Throughout Blair’s life, my family and I made several contacts in hospitals, palliative care, and charities. I plan to send all of these contacts an email, detailing the website’s goals. Then, I will meet with or call each of them individually to find out how they could help me reach these goals. Through these contacts, I hope to begin gathering a group of siblings who would find my website beneficial. Once I have a solid plan of how exactly I want the site to be formatted, I will reach out to a few companies who could help me create the website. The tech marketing company Launch That will likely be the company that I chose to create the website. To help pay for the expenses of making the website, I applied for a $500 grant from Disney. I want The B.L.A.I.R. Connection to include not only a blog page but also other websites and resources for siblings. I hope to also have a photo gallery page, which will share siblings’ photos. My goal is for The B.L.A.I.R. Connection to be up and running by the summer of 2018. After that, I will decide on a consistent blog upload schedule and focus on getting traction on the website. The goal is for the website to be a resource known by many hospitals so that it can be recommended to siblings all over the world. I hope the blogs on the website, written by other siblings and myself, can help children and young adults cope with their emotions. I will not only aim to help siblings in this way but also try to raise awareness of the challenges they face so that more resources like mine develop in the future. The B.L.A.I.R. Connection will be a global, long-term, and effective resource for siblings of terminally ill children.
Actions & Outcomes to Date: After discussing the details of my sibling support program with family, friends, and my FPS coaches, I started the process of creating The B.L.A.I.R. Connection. First, I sent emails to contacts in hospitals, other Sanfilippo families, and child life specialists. I explained my research on sibling support and goals for the website. I told each contact how they could help me reach these goals, by giving feedback, sharing their experiences, or finding siblings to contribute to the website. I also attached a document which further explained how I would carry out my goals, discussing cost and other details. A helpful contact that I made through these emails is Leslie Urandeta, a family resource coordinator for the MPS Society. The MPS Society is an organization which helps families of children with my sister’s illness (MPS). Leslie connected me to the MPS Society Sibling Resource Committee, a group of teens whose siblings have MPS. This was incredibly helpful, as I later initiated many phone calls with them and had the opportunity to get feedback from other siblings. I continued to be in touch with the Sibling Resource Committee throughout the next year and a half to get their feedback on new ideas. I was also fortunate to get to speak to Paige Fennessey, a child life specialist with hospice. She had many creative ideas for the website, including blog topics, more resources, and marketing techniques. She recommended that I promote the website with the National Alliance for Grieving Children and a local grief center called New Hope for Kids. Another impactful conversation which shaped my project was with a therapist at Arnold Palmer Hospital. I asked to meet with her to discuss ways to promote The B.L.A.I.R. Connection to siblings at the hospital. She misunderstood the purpose of the meeting and repeatedly asked me questions about my mental health and how I was feeling after my sister’s death. I was extremely uncomfortable, yet it only helped to solidify my thoughts on how to provide sibling support. Since this kind of face-to-face therapy was personally difficult, it made my opinion even stronger that online support would be the best way to help siblings. These interactions helped me develop my website throughout the next several months. In September of 2017, I met with Brian Wilson, the owner of Launch That, to discuss the creation of The B.L.A.I.R. Connection. I met with the website designers at least once a month for the next eight months and looked over many logo and website drafts. Finally, in April of 2018, the website and logo were ready to be launched and announced to the public. I won a $500 grant from Disney for my project and planned to use it to pay for the expenses of creating my website. After working with Launch That for several months, they realized how much the website would help siblings and donated their work on the website. I was incredibly grateful for their generosity. This gave me the opportunity to use my $500 Disney grant to aid in promoting the website after it was launched. I created and printed hundreds of pamphlets giving more information about my journey as a sibling and the purpose of the website. I used these to spread awareness and information at many different events in 2018 and 2019. The pamphlets are also available at Arnold Palmer Hospital and I hope to put them in other hospitals nationwide in the future. On May 26th, 2018, I announced The B.L.A.I.R. Connection on social media and posted the first blog. To help get the word out about this new resource, I posted in terminal illness Facebook groups and created accounts for the website on different social media platforms, such as Twitter and Instagram. On April 4th, which was the first anniversary of my sister’s passing, I posted a blog about “a year of firsts,” and how different my life was without Blair. In 2019, on the two year anniversary of her passing, I wrote a blog about the six days that I’ve missed her the most over the past two years. The blog was formatted as a letter to Blair and it was very helpful to my grieving process. These blogs made me excited to continue using the website in this way for the next several years. I hoped other siblings would find contributing to The B.L.A.I.R. Connection just as beneficial. In the first month after the website was launched, it had over 700 users and several siblings had agreed to write blogs for the website in the future. Near the end of my 2018 school year (8th grade), I wrote to my school’s administration about this success and applied for the Disney Doer and Dreamer award. During 8th grade graduation, I was chosen as my school’s 2018 Disney Doer and Dreamer. This was very exciting and motivated me to continue contacting siblings, writing blogs, and promoting the website. I had a great opportunity to promote The B.L.A.I.R. Connection at my 8th annual Purple Lemonade Stand in May 2018. In the past eight years of hosting this fundraiser, I’ve raised over $200,000 for research to find a cure for Sanfilippo Syndrome. This was the first year that I hosted a lemonade stand since Blair had passed away, so it was an important event for me to tell my community about this new project. During the fundraiser, I told several people attending about my website and its purpose. Many siblings of kids with Sanfilippo from Florida attended the lemonade stand, and I had the opportunity to share the resource with them. A local news channel interviewed me during the stand which was also a great chance to tell my community about The B.L.A.I.R. Connection. In the next few years, I hope to continue incorporating my website into the Purple Lemonade Stand. At this year’s lemonade stand, on April 28th, I will be fundraising for The B.L.A.I.R. Connection by selling stress balls with the logo. Over the summer, I received an email from a Child Life Specialist that I had been in contact with earlier that year, Erin Panzella. She let me know that Arnold Palmer Hospital was starting a new program called the Teen Leadership Council, comprised of teen patients and their siblings. She sent me an application and mentioned she thought I would be a great addition to the group. I applied and was accepted to the first Teen Leadership Council. For the next two years, I will attend meetings with these teens once every other month. The summer of 2018 was a critical few months as I worked on promoting my website while posting meaningful blogs at least once a month. On June 3rd, I posted a blog by Olivia Wiggins, whose little brother was recently declared Cancer-free. June 3rd is National Cancer Survivors Day, and Olivia wrote a blog about the importance and meaning of this day. Although it wasn’t challenging to keep a consistent blog schedule over the summer, it became increasingly difficult when my freshman year of high school started in August. I still hadn’t found the perfect upload schedule and struggled to get submissions from other siblings. In hopes of getting the word out about this resource and acquiring more sibling submissions, I looked into events I could attend in 2018 to spread the word about the resource for siblings. Paige Fennessey, a hospice contact I made in 2017, emailed me about an opportunity to go to a conference where child life specialists gather to learn about new resources. The conference was held on September 14-16, 2018. I was an exhibitor at this conference and had the chance to speak with hundreds of child life specialists about The B.L.A.I.R. Connection. My table in the exhibit hall displayed a banner with the website’s logo, my computer showing the website’s blogs, and pamphlets with additional information. Attending this conference was very beneficial in both promoting the website and giving me insight into the Child Life community.
As the website gained momentum, I received questions about whether guests could write blogs. While I originally aimed for the website to be “by-siblings, for-siblings,” I thought guest blogs would be a beneficial addition to the website. New and different perspectives on sibling support could be important for siblings of terminally ill children to read. If siblings have the chance to read about others’ care for sibling support, they may feel more comfortable opening up to them in the future. November is National Caregiver Month, so it was fitting to post the website’s first guest blog, by one of my sister’s caregivers, in November of 2018. In Grace’s blog, she not only explains the importance of sibling support but also tells funny stories about when she first started helping with Blair. I was eleven when I met Grace and watched her like a hawk every second she took care of my sister. Grace writes in the blog that although this was very intimidating, it showed her how much I loved my sister and the strength of siblings of terminally ill kids. I have posted four guest blogs since November. Two are by parents and the other by a child life specialist. Both have received great responses from siblings. Another new way of contributing to the website I started in the new year is called “collections.” Collections are created by siblings filling out a Google survey which asks simple, light-hearted questions. I used the responses to form several stories in one collection. The collection posted in January of 2019 was called the “Be Positive Collection” and it aimed to emphasize the positive aspect of a child’s relationship with their terminally ill sibling. The collection includes questions such as, “What is/was your favorite memory with your sibling?” and “What is/was your favorite activity to do with your sibling?” Six siblings contributed to this collection, and I plan to publish more collections with different topics in the future. I am currently working on The Be You Collection which has already received six responses from siblings, sharing their interests and passions. I have been promoting this collection on social media and plan to publish it on April 20th, 2019.
In a continued effort to promote the website, I applied and was chosen to speak at the WORLDSymposium Conference of Lysosomal Diseases on February 4th, 2019. This is a conference where doctors, scientists, and people affected by Lysosomal Diseases from around the world get together to discuss research and resources. My ten-minute presentation discussed my journey as a sibling, the importance of sibling support, and my website. At the end of the presentation, I received a standing ovation, the only one of the whole conference. After my presentation, a man from Canada told me about a teenager who started a fundraiser that is now international and very successful. He told me he saw this same potential in my website, which made me very hopeful for how much the website may accomplish in the future. This presentation helped me to create several important worldwide contacts, including Samantha Parker, a chief patient access officer from Europe. I also received my first blog in another language by a sibling from Spain, who had heard about the website through the WORLDSymposium. These were significant steps in expanding The B.L.A.I.R. Connection for siblings outside of the U.S.
Organization: To achieve many of the milestones mentioned above, I needed to be able to work well with people of different ages, careers, and experiences. From helping a twelve-year-old sibling write his blog to meeting with website designers, it was vital for me to be very organized as I developed this project. The main decision I made which helped me advance this project was choosing to make it a multi-year project. As I did more research in 2017 about creating a website, I realized I would need more than one year to accomplish my goals. This choice gave me the opportunity to make sure the website would be most beneficial to siblings, as I had time to test out different techniques. The first year of working on this project was focused on website design and community outreach, while the second has been developing the website, writing blogs, and reaching out to siblings. I have been sending contacts in the terminal illness community emails at least three times a year, updating them on my progress and asking about any new opportunities to spread the word. This helped me stay connected and learn about events. The most difficult communication aspect in creating this website has been the lack of contributions from siblings. I sent many emails to different siblings, asking if they would like to contribute to the website, and only some of them have replied. Some siblings responded with interest but didn’t follow through by writing a blog. I created the “Be Positive Collection” to give siblings an easier way to contribute their stories to the website. I aim to come up with more creative ideas, similar to collections, in the future in hopes of getting more submissions. Working with adults has been challenging in certain ways as well. When I first introduce myself to an adult who could help me develop my project, they often don’t take me seriously. Being a teenager, they may believe I will be irresponsible to work with and I won’t be dedicated to the website. This belief often caused contacts to stop replying to my emails or cancel calls. Being aware of how many adults felt about working with a teenager, I made an extra effort on all communications to triple-check my emails to all contacts and prepare for meetings days ahead of time. I wanted to represent The B.L.A.I.R. Connection well, and show I was taking my work seriously.
Resource Identification: Even with the challenges I experienced while working with some contacts, mentioned above, I am very grateful for all of the help I received while creating The B.L.A.I.R. Connection. The website wouldn’t be where it is today without an army of siblings, child life specialists, hospitals, and website designers. Many of the people that assisted me were contacts that I made throughout Blair’s life. Some contacts helped my family while Blair was in hospice, while others have known our family since her diagnosis. People that I met during Blair’s life who helped me with the website include Amie Deak, Glenn O’Neill, and Paige Fennessey. Amie Deak works in the Pediatric Brain Tumor program at Arnold Palmer, and I initially met her when she worked for my sister’s palliative care team. She helped me contact siblings and access hospital resources. Glenn O’Neill is the father of Eliza, who has Sanfilippo Syndrome. We met Mr. O’Neill and his family through fundraising for the Cure Sanfilippo Foundation. He helped me by sharing marketing tips, along with his unaffected son writing a blog for the website. These few contacts that I started with eventually connected me with other resources, such as Kirsten Black, Leslie Urandeta, Coreen Gray, Erin Panzella, and other people who work with siblings.
After these contacts helped me develop the website, I connected with several papers and magazines to help me spread the word. My school magazine included a story about my website in their April 2018 issue, which was sent out to all Lake Highland families and alumnae. The MPS Society also wrote to families affected by MPS about my website in the October eCourage newsletter. In late 2018, I received an email from Bright Lite Magazine, a national magazine that wanted to write a story about my website for the Health issue. They chose one of my blogs to include in their March 2019 magazine. Additionally, I emailed an Orlando Magazine editor in December and she agreed to write a short story about my website. This editor wrote a story on my fundraising in 2017 and was happy to do a follow-up piece on The B.L.A.I.R. Connection. Debbie Goetz, from the College Park paper, also wrote an article on my website in their March 2019 issue. Each of these media outlets has websites which can be accessed globally. Therefore, I hope these articles will help me reach the global terminal illness community.
Accomplishments: When I first started The B.L.A.I.R. Connection, my goals were simple. I wanted to create a well-designed website, help siblings globally, and spread awareness. I am incredibly proud to be able to say that, after two years, I have reached these goals. According to Google Analytics, The B.L.A.I.R. Connection has had over 5,000 visits since it was launched. This exceeds the expectations that I had for the website, and I hope that many of these users were positively affected by using the website. Several parents and siblings have used the contact page on the website to email me about how much they love the website and what a unique and necessary resource it is. These messages make my work on the website worth it, and they confirm the direction I took while creating this project. Of the 5,000 visits, 20% of the website’s users are from countries outside of the U.S., likely reached through social media promotions, presentations, and conferences. My presentation at the Lysosomal Disease Conference helped reach out to advocates and families from around the world. Anyone who has read a blog on The B.L.A.I.R. Connection becomes more aware of the bravery of siblings, and the challenges we face. One of the main goals of the project was to increase awareness of sibling support. This goal has been achieved in many communities and I will continue to share about the challenges that siblings face through the website.
Reflection on Outcomes: I am proud of my project’s positive impact on siblings as it has helped more people than I could have ever expected. This website has not only helped other siblings, but it has also helped me in my grieving process. I started this project just four months after Blair passed away, so I don’t know grief without it and to be honest, I don’t want to. While some may think that this website could serve as a reminder of what I’ve lost, I believe it has only made clear the experiences that I gained as a sibling of someone with a terminal illness. Blair taught me bravery, confidence, and empathy… all traits that I have used for the past two years while creating The B.L.A.I.R. Connection. I couldn’t have worked on this project each day without her constant support from heaven. I am hopeful that my website can help many other siblings in the way that it has helped me.
Scope of Project: The B.L.A.I.R. Connection website has reached over 4,000 people in the United States, along with 1,000 more users in other areas including Canada, Australia, India, and England. Additionally, The B.L.A.I.R. Connection’s Instagram posts have reached over 10,000 people all over the world. Many people learned about the website through in-person events as well. At the Conference of Child Life Professionals, over 200 guests learned about my website. Hundreds of families and advocates attended my presentation about the website at the Lysosomal Disease Conference. In addition to this outreach, over 50 siblings have contributed to The B.L.A.I.R. Connection with blogs, photos, and videos. I couldn’t have reached so many people online without these siblings’ submissions and their bravery to share their stories. The website has also received media coverage from business journals all over the U.S., including Kansas City, Atlanta, Birmingham, Memphis, Los Angeles, and Houston.
I believe that my accomplishments in creating this website solved the issues presented in my Underlying Problem. Although, only a small portion of the problems discussed in my Area of Concern were solved. I created a resource which has helped siblings worldwide, but more resources still need to be created. I hope that as I continue developing The B.L.A.I.R. Connection and as more people become aware of the challenges siblings face, all siblings of terminally ill children will have access to an adequate support system.