Jane Jarvis Dance Studio

💙 To the world, she is a rare disease statistic. To me, she is my daughter, and the ultimate fighter. 💙

When my daughter, Helaina, was born at the Royal Manchester Children's Hospital back in 1994, our world completely shifted.

When she was six months old the doctors gave us a name we had never heard before: Costello syndrome. When I asked what her future looked like, the answer was devastating: "We just don't know. Standing in that hospital room, feeling completely powerless was one of the hardest moment of my life.

But Helaina taught us very quickly that she wasn't going to sit back, and neither could we. Watching my daughter defy the odds If you ever want to see what true strength looks like, look at Helaina.

Over the years, I have had to hold her hand through:
🎗️ Fighting and beating aggressive abdominal cancer twice.
🧠 Surviving multiple high-risk surgeries on her heart, brain, and spine.
🏥 Countless hospital stays, tests, and gruelling recoveries. Every single time, she woke up, smiled, and kept moving forward.

Today, seeing her chase her passion for dancing and lighting up the room with her sharp Mancunian wit is the greatest privilege of my life. Building the Lifeline We never had back in the 90s, there were no Facebook support groups. I spent hours in Manchester medical library , looking for answers.

We realized that if we wanted a lifeline for our daughter, we had to build it ourselves. That is why we founded CostelloKids from our home in New Moston Manchester.

From day one, we made a strict promise: We operate completely independently, and we never ask our families for donations, because as a charity it is our roll to support them, not the other way around. We know first hand how complicated, overwhelming, and stressful life is when you are caring for a child with a rare condition. Financial strain shouldn't be another barrier.

Our charity runs purely on our own hard work, grit, and the incredible support of third-party donors. We want our families to focus entirely on what matters most, their children.

How you can stand with us today. While we never ask our impacted families for a penny, we rely heavily on the kindness of the wider community to keep providing vital conferences and running our website, as well as helping to support families. If you are in a position to help, we would deeply love it if you could:

🪙 Make a donation to help us fund our ongoing work.
🏃‍♂️ Organize a fundraiser
❤️ Do a Facebook fundraiser for Costellokids
📢 Share this post so that a father somewhere else can find the community they desperately need.

Helaina’s bravery built a global village.
Thank you for helping us keep that village alive

https://www.facebook.com/share/p/1E1MpnKfLf/

💙 To the world, she is a rare disease statistic. To me, she is my daughter, and the ultimate fighter. 💙

When my daughter, Helaina, was born at the Royal Manchester Children's Hospital back in 1994, our world completely shifted.

When she was six months old the doctors gave us a name we had never heard before: Costello syndrome. When I asked what her future looked like, the answer was devastating: "We just don't know. Standing in that hospital room, feeling completely powerless was one of the hardest moment of my life.

But Helaina taught us very quickly that she wasn't going to sit back, and neither could we. Watching my daughter defy the odds If you ever want to see what true strength looks like, look at Helaina.

Over the years, I have had to hold her hand through:
🎗️ Fighting and beating aggressive abdominal cancer twice.
🧠 Surviving multiple high-risk surgeries on her heart, brain, and spine.
🏥 Countless hospital stays, tests, and gruelling recoveries. Every single time, she woke up, smiled, and kept moving forward.

Today, seeing her chase her passion for dancing and lighting up the room with her sharp Mancunian wit is the greatest privilege of my life. Building the Lifeline We never had back in the 90s, there were no Facebook support groups. I spent hours in Manchester medical library , looking for answers.

We realized that if we wanted a lifeline for our daughter, we had to build it ourselves. That is why we founded CostelloKids from our home in New Moston Manchester.

From day one, we made a strict promise: We operate completely independently, and we never ask our families for donations, because as a charity it is our roll to support them, not the other way around. We know first hand how complicated, overwhelming, and stressful life is when you are caring for a child with a rare condition. Financial strain shouldn't be another barrier.

Our charity runs purely on our own hard work, grit, and the incredible support of third-party donors. We want our families to focus entirely on what matters most, their children.

How you can stand with us today. While we never ask our impacted families for a penny, we rely heavily on the kindness of the wider community to keep providing vital conferences and running our website, as well as helping to support families. If you are in a position to help, we would deeply love it if you could:

🪙 Make a donation to help us fund our ongoing work.
🏃‍♂️ Organize a fundraiser
❤️ Do a Facebook fundraiser for Costellokids
📢 Share this post so that a father somewhere else can find the community they desperately need.

Helaina’s bravery built a global village.
Thank you for helping us keep that village alive

https://www.instagram.com/reel/Dclc1ftsUzC/?igsi=aTBrdmF2MXRydTdo

Let’s help each other!!!!

Brilliant to see you guys tonight at the practice. It's amazing how quickly we can forget routines and techniques but I feel everybody got something out of it tonight and will be ready to jump straight back in when we Re-Open.

Plus it was great to get out of the house and see your faces. ❤️❤️❤️

Dancers of the week, well done guys 🥰

Dancers of the week, well done guys 🥰