The Butterfly Project 🦋

I'm Fundraising in Support of SickKids!

Spiritually butterflies represent hope, transformation,and new beginnings. no matter the struggle or where you start in life, you can become something beautiful 

Thats what sick kids did for our family, for Samara and without them she wouldnt be here with us today.

This fundraiser holds a special place in my heart

Around 20 weeks pregnant I found out Samara was going to be born with hypoplastic left heart syndrome ( HLHS) her left side of her heart was underdeveloped and not working.  This condition is fatal without 3 open heart surgeries within the first few years of life.

My heart was heavy and I was so scared for the future, but someone i knew told me "to make the decision I would least regret"  and so i decided to fight 

Although I always wanted a little girl named Samara i had other considerations. It was at this time I decided to go with whatever name had the best meaning

Samara - protected by God! I was always meant to have a little girl named Samara. 

Samara came into world in rougher shape than expected on August 16 2018 at mount Sinai hospital. 

She was stuck in the birth canal, so she was mangled from forceps. She was bruised, dented, blue and lifeless.

I held her hand briefly before they took her through the tunnel over to sick kids

At 1 day old I walked her to the OR for the very first time to have her Norwood, but she was pooling in the lungs and just had banding put around her pulmonary arteries to redirect the blood flow

At 3 days old they attempted to do the Norwood again and were successful 

Between 1-2 weeks old she needed to have coarctation of the aorta repaired and stents put in her left pulmonary artery and conduit. 

On top of many complications she had a bleed on top of her head, to many to count micro bleeds on her cerebellum and brain stem, a moderate to severe white matter injury, a mild white matter injury and hydrocephalus 

Due to these complications I was told she likely would never walk, talk or eat orally and ended up with a gtube 

Her heart surgeon Dr Honjo always came to talk to me, answered questions, reassured me through the tears and made it personal.  I'm forever grateful for everything he has done.  Not just him, but the entire team. I still have voices echoed in mind from this admission "we will do everything we can to keep your baby alive"

It was through this experience that my faith in humanity was restored, I started opening up and trusting others, felt hope and so much gratitude 

We went home mid oct 2018 for the first time. January 2019 she went into the cath lab to see if she was eligible for her Glen, but she wasnt. She went from a Norwood to a bt shunt in hopes that her pulmonary arteries would grow. There were complications but we were home in 2 weeks. 

Approximately 8 weeks after this heart surgery she went into severe heart failure and we started the heart transplant assessment. She didn't qualify in toronto because she formed to many antibodies, which led to high rejection rates, small pulmonary arteries and heart failure.

I didn't stop! I seeked second and third opinions. Boston turned us down immediately and Edmonton said they would consider a formal heart transplant assessment if her pulmonary arteries grew but we don't expect her to live that long.

I was told samara likely wouldn't live past 2020 ( not because doctors like giving timelines, but because I needed to know what they thought) 

I replied with, no way! I didn't fight so hard for her to live, just to let her die and when given the opportunity for a risky surgery I'm taking it. 

February 2020 she went into the cath lab and the anesthesiologist said some kids like samara make it out and some don't, are you sure you want to go through with this? I said yes, kissed her, told her to be strong and keep proving the doctors wrong and that's what she did

The same doctor who told me she likely wouldn't live walked towards us with a big smile on his face and said wow, I reviewed the data from her cath, she went from severe heart failure to mild heart failure, pulmonary arteries grew, pressure in her lungs are good, she qualifies for her surgery

She had her glen, March 2020 she had her 6th heart related surgery, there were no complications whats so ever out of 7. 

she was in and out in 3 days post op and discharged from the hospice a month later.

This surgery gave her, her life back

Samaras last heart surgery, to date was her fontan on may 19th 2022. Her heart filled with fluid and i think they drained 200-300 mls that was compressing her heart (pericardial effusion) but she was still home 2 weeks post op.

As of today Samara is here with us, living her best life. Her heart is doing well! She has bradycardia when she's sleeping, but I've been told she is in normal sinus rhythm and upper and lower chambers are communicating. She has inflammation on her cerebellum and has had seizures since feb 2025, but she doesn't let any of it hold her back 

She's a fighter and never gives up. Not only is she still alive, but she beat the odds with everything, she walks, talks and eats orally. 

With your generous support and contributions sick kids can continue supporting families, focus on quality care, have updated technology, faster diagnostic procedures and research 

Your thoughtfulness gives families new beginnings and miracles of hope that last a lifetime, creating a butterfly effect and real life miracles, like Samara 

"After every storm there is a rainbow of hope"