Headshot
Photo of happy family inside their house with parents and four children.
Title

The Hoyle Family

Family Quote
“We wouldn’t be here without the assistance of Spare Key’s Help Me Bounce program. We are so appreciative of that opportunity to be able to live our best life and to be able to be here for Chloe and help her live her best life possible.”
Cause
Cause:
Birth Defect
Raised
Raised:
$17,434
See campaign:
See campaign:
Story

“You’re excited for your first one to be born. And then to start hearing your doctor run through all of these concerns and then giving you the option of… 'Do you want to end this pregnancy?' ”

Josh remembers every second like it was yesterday. When he and his wife Kristen first arrived in Rochester thinking their baby girl was just holding on to her umbilical cord… to learning the reality of what their unborn child was facing… 

“Life is what we are choosing. There is no question. Whatever happens… we are going to take that and be positive. Because your outlook is what determines the future for your family.”

Chloe was born with multiple anomalies including a cleft lip, small stomach, small nasal passage and jaw, agenesis of the corpus callosum, hearing loss, and an irregular optic nerve system.  She was diagnosed with Bohring-Opitz Syndrome or BOS in 2019 – about a year after her birth. BOS is a diagnosis that has been given to less than 250 individuals worldwide. It affects one’s growth, development, and various organ-systems. For Chloe, BOS means low muscle tone, contracture of her extremities, epilepsy, hearing and vision impairment, non-verbal., central apnea, feeding difficulty, airway anomalies and more.

Chloe at the Hospital

Parents kissing their newborn baby on the head
Newborn baby in the hospital hooked up to devices
New brother holding baby sister at the hospital

But Josh explains, “This is Chloe. This may not be what you expect or the situation you had drawn up in your mind. But in order to be the best dad and the best mom to Choe, we have to embrace this. We have to eat, sleep, and breathe this stuff so that we can confidently take care of her and make sure Chloe is living the best life she possibly can.”

The first week Kristen and Josh brought Chloe home, reality really set in. They quickly realized… “Nobody is coming and you need to stay awake all night to keep your baby girl alive. That makes it really hard to keep going in to your every day job.”

It was pretty natural for the Hoyle Family to make the decision for Josh to become  the full-time overnight nurse for Chloe. It was an “easy” decision because they knew Josh could do it, but it also put them in an extremely difficult position because all of the sudden they had lost a large source of their income.

“How do we do this? How do we make ends meet?”

Kristen was asking around with the friends that we met in the NUCI and they had recommended Spare Key and our program Help Me Bounce. They thought that could be the thing that helps them stay afloat while Josh concentrated on Chloe’s health each night.

The Hoyle’s originally thought if they could get help for that first month, that would be huge. That could help them bridge short-term until they figured something else out. But Help ME Bounce has done so much more than that.

Josh: “Help Me Bounce has been a lifesaver. It has been SO instrumental. It has kept a roof over our heads and helped us to be able to stay afloat and concentrate on Chloe.”

Kristen: “I am abundantly grateful because Josh wouldn’t be here otherwise. He would be at work all day. I get to share these moments with him and I am just so appreciative that Help Me Bounce has allowed us to have him here with us in this house with everything we need for Chloe’s health.

Memories Together as a Family

Hoyle Family dressed up for Halloween
Little girl in wheelchair getting physical therapy
Family dressed up for the 4th of July

There is so much stress that comes with the special needs life. But Spare Key has helped the Hoyle Family to be able to start living the dream they have for Chloe. There are so many things they are looking forward to this year and they want to build a bigger community for children like Chloe. Josh and Kristen want to help other families navigate – to give the support they needed when they were first navigating how to keep Chloe happy and healthy.

“We just wanted to say thank you so much.. to Spare Key… to Help Me Bounce… to donors like you that have made it possible for us to be able to have a roof over our heads. To be able to take care of our child. And to be able to build those memories with her. There’s not a price tag you can put on that. And we are so thankful and appreciative of all you do and all that you have given to make that possible for us.”

Hoyle Family Story