When Rachel and Josh welcomed their twins on October 25, they had every reason to look forward to the precious moments of raising two newborns together.

But alongside the joy of becoming parents to twins came a journey they had never imagined — one that would see their family spending months away from home, learning complex medical procedures and fighting to give their little boy the safest possible future.

Their son, Myles, was born with Crouzon syndrome, a rare genetic condition that causes the bones in the skull to fuse too early. The condition affects the development of his head and facial structure and has also brought significant breathing difficulties.

For Myles, the challenges began from the very start. His parents soon learned that his journey would involve multiple surgeries throughout childhood and even into his teenage years.

Since his birth, the family has been staying at the Ronald McDonald House in Hamilton so they can remain close to Myles while he receives the care he needs.

Doctors performed nasal surgery in the hope of improving his airway and allowing him to breathe more comfortably. Sadly, the procedure did not provide enough improvement for Myles to breathe independently and safely return home.

He subsequently needed a feeding tube, known as a G-tube, as well as a tracheostomy to help him breathe. He will also require a ventilator overnight.

Now, after months of hospital stays and uncertainty, Rachel and Josh have been given a new discharge date: the end of June. But bringing their little boy home means preparing for a level of care that goes far beyond what most new parents ever expect.

Every day, the couple spends countless hours at the hospital with Myles, learning to manage his feeds, medications, tracheostomy care and other essential routines.

Josh and Rachel are also completing extensive medical training alongside two of Myles’ grandparents, determined that everyone caring for him at home will know how to meet his needs safely.

For Rachel and Josh, every lesson brings them one step closer to the moment they have been waiting for — having their family together under one roof.

“We have spent hours upon hours at the hospital every day, doing everything we can to learn how to care for Myles and prepare him for life at home,” the family shared.

Yet as that long-awaited day approaches, another difficult reality is becoming impossible to ignore: the financial cost of caring for Myles.

Although some medical equipment and support are covered, a significant portion must be paid for by the family themselves. Myles is expected to need more than $10,000 worth of medical equipment every year, including one essential machine that alone costs $3,000 out of pocket.

“As much as we never wanted to ask for financial help, supporting Myles’ needs while trying to preserve our savings for his future has become increasingly difficult,” Rachel explained.

The couple says any contribution, no matter how small, would go directly towards the equipment and resources needed to make Myles’ homecoming as safe and comfortable as possible.

Source: Gofundme