YANA 2022 - Meet Penny and family

Every day, parenting is a new adventure and with three children and one on the way, parents Sophia and Taylor understood that, and they embraced it, actually they relished in it. As they came close to their due date for their new baby, they approached it with ease.

Throughout the pregnancy, there were some difficulties, but testing ruled out any problems, and as people who always assume the best, they weren’t worried and anticipated a healthy delivery.

Which they received. And they welcomed their fourth daughter, Penny Fraser Long.

That moment came when you put the baby on your chest. But something wasn’t right, Penny was making a noise indicating distress and she has quickly whisked away for medical support.

And then fear took hold for Sophia and Tyler, as Penny’s breathing difficulty increased and it became evident that she had physical abnormalities. Penny was flown to the hospital in Victoria and Taylor and Sophia, confused, scared tired, very post-partum made the drive to Victoria to join her.

They arrived in Victoria, and the only reason they had a plan was because of YANA Comox Valley. YANA staff called them while they were driving and let them know that funds were being sent to them and a hotel was booked and paid for.

The following days were a blur.

Every day, sometimes every hour, the staff would come to Penny and Taylor with a new concern: Cleft palate, cyst in her spine and pituitary gland, brain abnormalities, optic nerve hypoplasia, ventricular septic defect, dysmorphic features, kidney dilation, un-secure airway and the list grew and grew.

Because of Covid, Sophia and Taylor couldn’t be in the hospital hearing this at the same time. So one parent would go to relay it to the other parent who was sitting in the car.

And through all this YANA was there.

Sophia remembers thinking that they weren’t someone who needed YANA, but that is before their one night in victoria became 4 months and YANA arranged for them to stay next to the hospital at Janeece Place.

YANA was much more than housing and financial support. The staff at YANA were there to provide a compassionate ear, which was valuable as it was different than sharing with friends and family because YANA didn't have the same personal stake in their situation and was accustomed to supporting parents through fear. And, YANA reminded them that their community was there for them, holding them close. YANA is so much more than a place, or an envelope of financial support - it is an extension of the heart of this community.

YANA was there when at two weeks old Penny was intubated and put on life support.

YANA was there when the doctors came to Sophia and Taylor multiple times, over weeks and, told them that it was time to consider comfort care, as Penny’s condition could be palliative.

And YANA was there when they had to make the decisions, despite not having a diagnosis yet, if:

• They would keep Penny intubated indefinitely, with the hope that her tubes might get removed as she grew.

• They would remove the intubation and move to palliative care. Or

• They would get her a trache. Thich meant turning their home into a medical center, becoming a knowledgeable part of an extended care team and ongoing hospital visits for care. There was also no guarantee a trache would work and what her quality of life could be. Penny had been sedating most of her life. So there wasn’t knowledge of what her brain function was or wasn’t.

They chose the last option, the trache, because they wanted Penny to have the chance to show her family who she was.

So let me tell you who Penny is.

Penny is a one-year-old who loves to watch her sisters, Hanna, Genevieve, and Marlow. According to her sisters, she is someone who brings a lot of cuteness into their home, that is one of their favourite things about their little sister, oh and they love that her trache and medical equipment is “kinda cool.”

Penny is also someone with many needs, some of which are life-threatening, so she has a nurse every night and needs constant care from her parents. She also has therapy appointments and requires monthly visits to Victoria, which is made easier by YANA. In a few weeks, she has kidney surgery.

She is part of an incredible family, who are rooted not just in acceptance but gratitude for the gift of this little girl, and the support of the community. They are thankful that Penny is teaching them about compassion and being inclusive to people that have differences. Penny brings more love into their family.

Penny's arrival did not go as planned, no one could have imagined the storm and emotional and logistical strife that her arrival would bring.

But what all of us can imagine is what the support looks like if you live in the Comox Valley and are faced with having a critically ill child. The reason we can imagine that is because of YANA.

This little special baby who has overcome so much is here in our community, teaching her family new things, and bringing with her sweet little smile and cheeks, so much joy to those that meet her.

For better or worse, this is a family that loves hard.

I am so honoured to have had this time to capture a day with this incredible family, I hope you can feel the love they are made of.

These photos were used in a slideshow presentation at YANA’s annual fundraising event.

My family was deeply supported by YANA when we faced having a critically ill child and after capturing our journey, I have been telling YANA family stories for 17 years. These images are a gift to YANA and a gift to the family I capture. It is an honour to be trusted to capture these families and to continue to learn and be inspired by them. Thank you to this incredible family for welcoming me, and the community into their story.