Butterfly Run

Annual Butterfly Run supports pregnancy and infant loss care at Roger Neilson Children’s Hospice.

“Being a bereaved parent is a walk no person should do alone.”

Living life to the fullest, no matter how short

It’s a tough statistic, one that demands greater awareness and advocacy; pregnancy and infant loss affects 1 in 4 Canadian families, while 1 in 6 are affected by infertility issues. Inspired by the butterfly symbolism of transformation and moving forward, forever changed, the Butterfly Run began in 2017 as Aaron’s Butterfly Run, the first charity run of its kind in the Ottawa area.

Based on the belief that the path of being a bereaved parent should not be walked alone, the Butterfly Run is dedicated to increasing awareness and compassionate support for the parents and families who have experienced pregnancy loss, infant loss, pregnancy after loss, and infertility. In addition to being a time to come together to hear, to share and support each other, all proceeds raised help to fund the Roger Neilson Children’s Hospice, particularly the Perinatal Hospice program, which supports families whose babies are likely to die before, during, or shortly after birth, as well as the Perinatal Loss Bereavement Support Group.

The 2024 edition of the Butterfly Run will be held on Sunday October 6.  To participate support these courageous families as a volunteer or to donate or sponsor a runner, go to www.butterflyrunottawa.ca.  For more information on how Roger Neilson House supports families suffering loss, visit [RNCH link.]

Kyle Turris

Baking cookies and making memories

Former Senator’s centre visit scores plenty of smiles.

Roger Neilson Children’s Hospice kids enjoyed a great afternoon thanks to a visit by former Senator’s centre Kyle Turris.

Turris, who retired from the NHL™ in 2022 after 14 seasons, more than half of his career playing for the Ottawa Senators, has a reputation for being one of the most well-liked players in the franchise’s history. We definitely know why. Kyle generously spent time with us, autographing cards and helping us bake, making it a memorable time and bringing plenty of smiles to our kids’ faces.

We want to thank Kyle for taking time to make such a special visit – and once again, share our gratitude for the wonderful relationship we have with the Ottawa Senators hockey club.

Family story: William Bradford

The Bradford’s

“We thought we would never have a photo of us all together. Now we have these lovely photos to remember William just as he was. We thank RNH and Dr. Wong for making this lasting memory happen.”

Vicki and Richard Bradford.

Vicki and Richard put off making arrangements for family photos while focusing on managing their baby William’s complex care needs. Seeing that taking care of William’s medical needs was overwhelming at times for Mom and Dad, our team wanted to create opportunities for the family to capture their meaningful moments together. Recognizing the importance of capturing their child’s life – no matter how short – we offered to arrange family photos. Roger Neilson Children’s Hospice volunteer Dr. Derek Wong, a physician in pediatric cardiology at CHEO, answered the call, taking pictures on a Friday when Richard and Vicki dropped William off for a much-needed break.

Baby Schafer

Norah Schafer

Man in a Ottawa Senators jersey standing on a red carpet placed on skating ice

“We were going to have to go through the hardest experience of our lives, but we were okay because we were in a place that was going to guide us through it.”

Perinatal loss and support

‘Little, tiny baby with the cutest button nose’

Katherine Clubine and Michel Schafer started their journey with Roger Neilson Children’s Hospice when their newborn daughter Norah encountered major challenges. After spending the first few weeks in the neonatal unit at CHEO, the family turned to Roger Neilson Children’s Hospice.

Katherine, Norah’s mother, says, “Norah was born in July of 2021. She had the cutest button nose and my chin dimple. She was this little, tiny baby. I think it became clear pretty quickly that she had some challenges. Her life was going to look very different than what we had envisioned for her when we first learned we were pregnant. But you know, we loved her anyway, we said we love you to the moon and back. We’re going to help you live the best life that you can.”

Family-focused care through the most difficult days

Norah started declining at about seven weeks old and it started to become clear that the challenges were just too much for one baby to handle.

The palliative care team at Roger Neilson Children’s Hospice became involved in their lives, caring for Norah. “But they also took care of both Katherine and I; they treated us as a family unit,” says Michel.

Katherine added, “We were going to have to go through the hardest experience of our lives, but we were okay because we were in a place that was going to guide us through it.”

Norah Schafer passed away peacefully at Roger Neilson House on September 2, 2021, with her entire family in the room to say goodbye.

“We spent the whole afternoon together as a family, and it was the most beautiful afternoon. I just felt like this ball of fear that had been in my stomach for weeks had started to lessen. That was the first time that I felt that Roger Neilson House hug that I call it now,” said Katherine.

Roger Neilson House gave the family a set of heart-shaped necklaces, with Katherine and Michel’s missing a heart, which went to Norah. “We wrote Mommy and Daddy on each of our hearts, and we gave those to her to keep forever. All three of us have a part. It is one of the most precious things I own,” said Katherine.

“I think working with the team here, and the counselling, has allowed us to process those memories because they have helped get us through that grief and rebuild elements of our lives,” said Michel.

Even though Norah has passed on, Katherine and Michel are still a Roger Neilson House family. “I feel Norah’s spirit here in Roger Neilson House because she was here. So, whenever I come here for an event it makes me feel like I am spending time with my daughter,” said Katherine.

Both Katherine and Michel have courageously shared their story as part of the Senators Community Foundation’s Ignite Hope campaign, raising awareness and funds for Roger Neilson House.

Tait Gofton

Life is Beautiful

“I can’t imagine going through this process without the amazing staff and volunteers that exist in that home (Roger Neilson Children’s Hospice). I really can’t put into words how much they mean to us,”

Tait’s mom, Emma Gofton

Tait was a 15-year-old boy with a deep desire to know, to love, and to help others. He also had the courage, at a very young age, to live on his own terms. He lived every day according to his life’s motto: “Life is Beautiful”. By embracing that philosophy, he was able to both live, and die, by those words. Roger Neilson Children’s Hospice helped him to live to his fullest by supporting his wishes and life philosophy.  

Diagnosed with a rare genetic condition at birth, when Tait’s illness progressed, he stayed at Roger Neilson Children’s Hospice every month or so to manage his symptoms and to provide respite to his family.

He quickly became a beloved member of our Roger Neilson Children’s Hospice family and as the end of Tait’s life neared, Roger Neilson Children’s Hospice staff did all they could to give him and his family cherished moments.

According to Emma Gofton, Tait’s mom, “Roger Neilson Children’s Hospice plays an evolving and anchoring role in our lives…we have a community and an extended family there, and it enriches the lives of everyone who knows and loves our kids.” Tait’s sister, Aislinn, also diagnosed with the same condition, received support from Roger Neilson Children’s Hospice until she transitioned to adult care after turning 19.

One of Tait’s dreams was to become a Walmart greeter. Roger Neilson Children’s Hospice staff worked with his family, CHEO Foundation and a local Walmart to make it happen. Walmart spared no fanfare, with the National President arriving to present Tait with the President’s Pin. Tait took part in the team huddle before the store opened, received the employee of the day certificate — and got to live his dream because we listened to what was important to him and made it happen.

Boy and man lying down with their heads touching

Looking to make friends everywhere, even in heaven

Early one morning Tait asked Roger Neilson Children’s Hospice Executive Director Megan Wright if she had time to talk to him. She cleared her calendar and made time to chat that afternoon, not knowing what he wanted to discuss.

That afternoon, at 2:00 p.m. he wheeled himself into Megan’s office in his power chair with his mom in tow. He asked Megan if she knew of anyone in heaven who might become his friend.

That was Tait, always wanting to make friends wherever he went. Together with our staff, Tait even planned his own funeral, deciding on every detail. Here was a teenager preparing for his death in his own way, on his own terms.

But before that, with the help of Roger Neilson Children’s Hospice and at the house, Tait planned and hosted a living celebration of life.  Again, he planned who would speak, and the food, and invited about 75 of his nearest and dearest family and friends.  And in that space, he told the people he cherished that  “I love you.”  He said goodbye to those he loved, in his second home, feeling secure and loved.

Tait felt so comfortable at Roger Neilson Children’s Hospice, that when he knew he didn’t have much time left, he told his family it was time to go to Roger Neilson Children’s Hospice. He wanted to spend his last hours there, feeling at home and surrounded by the staff members, friends and family he loved so dearly.

Tait died in 2019 and hundreds of people came to Tait’s funeral, one of the biggest our staff had ever attended, to celebrate his life. Tait had touched and impacted so many people by living a life where he shared his sense of joy, compassion, and fun with others.

“Rogers Neilson House isn’t about learning how to die well, it’s about learning to live your life as best as you can, for as long as you can,” said Tait’s mom.

Tait’s mom Emma says, “When people hear our story, they hear sadness and pain, but there’s great joy and beauty in these children’s lives because of Roger Neilson Children’s Hospice. It has added quality to our lives and has become our second home…We’re very grateful to Roger Neilson Children’s Hospice for all that they do and so thankful to the Ottawa community for supporting them.”

Together with Tait’s family, we continue to celebrate Tait’s life and legacy at Roger Neilson Children’s Hospice.  The olive tree in the Roger Neilson Children’s Hospice playroom was donated by Tait’s Endowment Fund. It is a reminder of Tait’s life motto that “Life is Beautiful” and that we should lead our lives with love and peace.

Tait and Aislinn loved to dress up and their family wanted to keep that spirit alive at Roger Neilson Children’s Hospice. They decided to donate a costume closet filled with outfits that bring joy and fun to the kids at Roger Neilson Children’s Hospice. It is a gift in memory of both Tait and Aislinn to help the children of Roger Neilson Children’s Hospice live a rich, playful and beautiful life.

The Ottos and Maddy’s Gala

The Otto Family: Giving Back and Honouring their Daughter through Maddy’s Gala

Maddy Otto was larger than life at only five years old. She was always in some sort of costume playing superhero games with her sister Hannah, who was two years older.

Dean and Jeanine Otto’s lives changed one summer day in 2007 for their little girl who was always playing a hero.

They were up at their cottage, it was a day like any other, everyone got up, was playing and having fun, and it was time for Maddy to have a rest in the afternoon. When she woke up, she seemed “off”, said dad Dean. Within a few minutes, we realized that she had suffered a seizure.

The family ended up rushing her to the Children’s Hospital of Eastern Ontario (CHEO), where they learned the most devastating news, Maddy had been diagnosed with an inoperable brain tumor at the stem of her brain and given 48 hours to live. Their outgoing little Maddy was dying, and they couldn’t do anything.

Grief support to carry on and build community

After their daughter’s death, they were welcomed into Roger Neilson House’s grief program which included group sessions. Here, dad Dean and mom Jeanine were given the strength to carry on through their grief and healing process. Their seven-year-old daughter Hannah attended as well, but in the Roger Neilson House siblings’ program.

“That day when we all walked in and were introduced to each other, we all kind of had chips on our shoulders. We were all hurting in the most unimaginable way, but about six weeks later we all became new friends. They are our family now. They are our Roger Neilson House family,” said Jeanine.

“The bereavement counselling and group therapy were instrumental to us surviving the first stages of what we refer to as ‘our new normal’. We had a safe and special place that we could go, and this was vital to our survival.”

Beginning Maddy’s Gala

The Ottos decided they wanted to dedicate a part of their new life to raising awareness and funds for Roger Neilson Children’s Hospice, in Maddy’s honour. Maddy’s Gala was formed within a year of Maddy’s passing.

“We decided as a family that we wanted to give back in some sort of way to Roger Neilson Children’s Hospice as a thank you. No child should die but if they do Roger Neilson Children’s Hospice helps make the journey as comfortable as possible. Our mission was to raise awareness and have as much fun as possible,” said Jeanine.

Maddy’s Gala started as a small event, but around the third year of organizing they started to receive sponsorships from businesses within the Ottawa region. Once more businesses found out about Maddy and the Otto family’s story, the event started to snowball as the local community generously gave back.

“We have been so blessed with an amazing organizing committee, everyone has their specific role and some people have been with us since day one. We usually start planning about six months in advance. Ottawa is a very generous community,” added Jeanine.

Signature fundraising gala in Ottawa

The family completed their 14th year of celebrating Maddy’s Gala in 2023, attracting hundreds of people and surpassing 1 million dollars in funds for Roger Neilson Children’s Hospice over the years, a true accomplishment to keeping Maddy’s spirit alive.

For other families interested in fundraising for Roger Neilson Children’s Hospice, Jeanine recommends that they, “Do what feels right to them and find a theme or an idea that resonates with your family and your child.”

As the Otto family knows well, no fundraiser is too small. As their journey with Maddy’s Gala began with a simple goal to give back, they  are grateful to have reached “Ottawa’s Best Black Tie Event” in 2018.

“There are people that are going to go through the same tragedy as us. They are going to go through what we went through. This is for them, and keeping Maddy’s spirit alive is the icing on the cake for the Ottos.”

Baby Charlotte

Baby Charlotte

Mom and dad holding baby in pink shirt with their hands placed on babies head

‘Our stay at Roger Neilson Children’s Hospice wasn’t about dying. It was about living’

Living life to the fullest, no matter how short

The worst possible news

Baby Charlotte’s parents, Anne-Marie and Tommy Warren received the worst possible news shortly following their daughter’s birth. Doctors determined that Charlotte had sustained a devastating brain injury during her birth, with only a small portion of her brain stem remaining, possibly not enough for her to know how to breathe. Broken-hearted, Anne-Marie and Tommy prepared to let their newborn daughter go.

A focus on making memories

The Warren family chose to have Charlotte’s breathing tube removed and to have family pictures taken so they could remember their time with their daughter. After an hour in the garden, her heart rate and breathing were slowing, but Charlotte was still breathing. When she opened her eyes and even started to hiccup, it was clear Charlotte wasn’t ready to go, so her family came to Roger Neilson Children’s Hospice.

Living every day to the fullest

When the Warrens arrived at Roger Neilson Children’s Hospice, it was expected they had only a few hours — maybe a day at best — to say goodbye. Charlotte had other plans, living at Roger Neilson Children’s Hospice for 37 days, and her family lived every one of those days to the fullest with the support of our team.

Charlotte and her family experienced many firsts in our care: her first bath, her one-month birthday party, car rides to Tim Hortons, tasting mommy’s favourite Swiss Chalet sauce, dressing up for Halloween, and countless family snuggles. From the very beginning, the family was able to build memories to make the most of their time together.

‘Our stay at Roger Neilson Children’s Hospice wasn’t about dying. It was about living’

While Charlotte’s time would be short, the focus from the very beginning was to spend time together and build memories as a family.

When her last day arrived, her mom knew. Anne-Marie took her to the nurses’ station at Roger Neilson Children’s Hospice first thing in the morning and told them the time had come. At 44 days old, Charlotte Warren died in the arms of her family at Roger Neilson Children’s Hospice. Anne-Marie and Tommy just snuggled with her in bed until she passed away.

Anne-Marie is grateful to have been a part of the first pregnancy after loss support group at Roger Neilson Children’s Hospice, which she attended through her pregnancy with her son, Colt. This program at Roger Neilson Children’s Hospice allows parents who have experienced a previous loss to share their worries and concerns with others in a similar situation. Parents have a safe space to talk about their loss and fears and to welcome joy back into their lives during pregnancy.   

The support that Anne-Marie and Tommy received from Roger Neilson Children’s Hospice left a meaningful impact on their lives. Anne-Marie is now co-chair and media director for the Butterfly Run Ottawa, which has, since 2017, supported Roger Neilson Children’s Hospice and families who have experienced infertility, a loss during pregnancy or the loss of an infant. It’s one of the many ways Anne-Marie feels her daughter Charlotte and her son, Colt, can stay connected. 


Honoring one of the first children at Roger Neilson Children’s Hospice

Parents hugging their son in front of a garden

“We cannot even imagine where we’d be if Roger Neilson House wasn’t here. It’s not only a place, it’s a family for us…we will never be able to find the words to thank enough everyone involved with Roger Neilson Children’s Hospice.”

Osayd’s Parents

Osayd’s family have thousands of photographs throughout their home and countless loving memories. “He was a mummy’s boy,” says his mom.

The Abdali family’s new life full of pain and harsh realities started about a week after Osayd’s birth. He was born a perfectly normal child, their first-born baby, with lots of hopes and dreams for his future.

Everything changed when he had his first seizure when he was only 10 days old. Osayd had an undiagnosed neurodegenerative disorder and his neurologist informed the family that children who experienced this condition would not survive past the age of four or five years old. He would have seizures all his life, with his parents estimating that 80 percent of his moments were in a seizure.

Osayd would never see, never walk and never talk. From the time he was born, his parents were told that he needed palliative care. “It was so hard for us without any family members and at that time there was no such place like Roger Neilson Children’s Hospice,” said Osayd’s mom. It would be two years before Roger Neilson Children’s Hospice opened its doors and Osayd became one of the first children to enter its care.

“Roger Neilson Children’s Hospice was with us at every moment, whenever we needed them; they heard our unsaid words,” says Osayd’s dad.

Child in a comfy swing with his parents caring for him.

Respite care when families need it most

“It’s 24 hours a day, we were so overwhelmed.” Through respite care, Roger Neilson Children’s Hospice was able to give Osayd’s parents a much-needed break from his around-the-clock care at home — a regimen overwhelming even for his mother, despite the fact she is a trained doctor.

‘Surrounded by eyes that were crying with us, hands which were ready to wipe our tears and words that gave us strength’

When Osayd’s condition worsened, the family chose to turn to Roger Neilson Children’s Hospice for end-of-life care. “We knew that this journey is the hardest part, and it was a necessity. We knew that there are people who are with us. That we can count on them. The last ten days of Osayd’s life were difficult, but it was peaceful. Fortunately, due to Roger Neilson Children’s Hospice, we were able to spend the most difficult time of Osayd’s journey in peace, surrounded by eyes that were crying with us, hands which were ready to wipe our tears and words that gave us strength in the most excruciating painful moment of any parent’s life… we gave Osayd every second of our life. He chose to go in our arms…[at Roger Neilson Children’s Hospice].”

Following Osayd’s death in January 2011, his family’s relationship with Roger Neilson Children’s Hospice continued. A couple of months after Osayd’s death, the family joined the bereavement support group. “We were not sure how we were going to cope after losing Osayd. Visiting Roger Neilson Children’s Hospice, meeting with the social worker and other staff and joining the bereavement group provided us peace and also helped us in grieving,” says Osayd’s dad.

Osayd’s mom adds, “Even though grieving the loss of a child is a never‐ending process, the group provided us a safe environment where we could share our feelings, thoughts and emotions. It gave us comfort and helped finding our new normal by listening and sharing with other similar parents.”

Family holding hands

“We cannot even imagine where we’d be if Roger Neilson Children’s Hospice wasn’t here. It’s not only a place, it’s a family, for us…we will never be able to find the words to thank enough everyone involved with Roger Neilson House.”