Every

once in a while, you meet people that no matter what the odds, seem to defy
lifes hardships and challenges with grace and compassion. Today I would like to
introduce a family, that despite facing insurmountable odds, have overcome more in
4 years, than most do in a lifetime.
December 21 2011, as family
gathered for the holidays,
Hannah arrived home from
work that evening with some
incredible news for her partner
Shawn, they were going to be
having their first child. Despite
being a surprise to both, they
were excited that a new chapter
was to begin for them. Not
knowing it at that time, this
chapter would prove to be one of many in an evolving story that brings us to the
present time. The holidays were spent celebrating the good news, as everyone was
excited to think that by that time next year, we would be celebrating the holidays
with a new baby. Unfortunately the journey to get to that point would prove to be
daunting, and would challenge Shawn and Hannah beyond their imagination.

The first 4 months of the pregnancy went quite well, as Shawn and Hannah
prepared like many first time parents do, with anticipation and a little
apprehension. Living in Vernon at the time, they looked forward to raising their
child in a small town environment that focused on community and living an active
lifestyle. At the 20 week mark, during an ultra sound it was determined the sex of
the baby, it was going to be a boy! The exciting news was shared with family and
friends, and it was shortly after that Shawn and Hannah picked the name Dominic
for their soon to be little man. The planning was in full force, as everyone prepared
for the last half of the pregnancy.

During a routine visit with their doctor, it was determined that Hannah was
measuring slightly larger that she should have been, so as a precaution an
ultrasound was done just to make sure things were moving along ok. Later that
Friday, Shawn and Hannah left town for a weekend getaway, as this would most
likely have been the last chance they had to get out of town together before Dominic
arrived. As night began to fall, Shawn and Hannah were approaching Grand Forks,
when their cell phones began to ring and beep as they entered an area with cell
phone service. It was this call that changed everything. The Doctor was calling to
talk about the ultrasound results, and wanted to see them first thing in the morning.
Getting a call from your doctor on a Friday evening can never mean good things, and
this proved to be the case. So, a very anxious and scared Shawn and Hannah
immediately turned around and made the long drive home in the dark to get ready
to meet their doctor in the morning. With very little sleep, Shawn and Hannah along
with Hannahs mom and dad Michelle and Jeff, met with their doctor to discuss the
findings of the ultrasound. It was determined that Dominic was quickly developing a

condition called Hydrops, in which his body begins to retain fluid in multiple areas.
This has many causes, which can range from minor to extremely dangerous, but for
that to be determined, they would need to meet with specialists in BC Childrens
Hospital. So with little warning, the doctors instructed Shawn and Hannah to
immediately head to Vancouver, where a team was awaiting their arrival. Unaware
of what was to follow, Shawn and Hannah packed a backpack with some clothing
and began the drive to Vancouver to begin what was to be a long series of testing
and discussions around Dominics health. Arriving at BC Childrens around 7pm, it
wasnt until close to midnight before Shawn and Hannah were introduced to Dr.
Tessier, a doctor with Maternal Fetal Medicine. That evening, she performed a 2hour ultrasound, to begin the investigation phase and try to determine what they
were dealing with.

This would be the first of many tests over the following weeks, up to and after
Dominics birth. With there being over 200 different causes of the Hydrops that was
identified, it wouldnt be an easy process to formally identify and diagnose a specific
condition. Fortunately, Hannahs mom Michelle lived in Richmond, and was able to
provide a place for Shawn and Hannah to stay. Unfortunately, with the amount of
testing required and concern for Hannahs health, they were not able to return home
to Vernon. Right from the start the doctors were very concerned, and were hesitant
about recommending carrying forward with the pregnancy. They made it very clear
that Dominic would be lucky to survive birth, and if he did it would most definitely
entail a very short life of disability and significant challenges. Shawn and Hannah
were presented with options, but deep down they both knew that Dominic deserved
a chance at life, and they would be willing to make whatever sacrifice needed to give
him the life he deserved. So the weeks continued on, testing continued to rule out
conditions and disorders one by one, but no diagnosis would come.

Shawn happened to be off work during this period due to a work injury a few
months prior, however was required to do physiotherapy in Vernon and had to
begin a modified duty return to work program with WCB. So a couple weeks after
arriving in Vancouver, Shawn had to return home during the weekdays to begin
physio and return to work. Obviously this was extremely difficult for both Shawn
and Hannah, being away from each other during this extremely stressful time put
significant pressure on an already tough situation. As the weeks went by, and testing
continued to bring no results it was becoming more and more clear that they were
dealing with something a little more serious then initially thought. During Shawns
physio it was determined that he would require surgery to correct damage in his
wrist sustained from the accident a few months prior. It was right around this time
that the doctors also determined that based on Dominics status at that time, he
would need to be delivered early, at 34 weeks. As July approached, Shawn was again
off work and back in Vancouver with Hannah, as they prepared for July 19th,
Dominics arrival.



The day of the 19th was certainly a nervous one for Shawn and Hannah, and the rest
of the family as well. Since they still had no answers on what Dominic was dealing
with, and the doctors were cautiously optimistic about him surviving birth, time
seemed to stop that afternoon. As family anxiously waited in the waiting room,
Shawn and Hannah along with a large team of doctors, prepared for Dominics
arrival not knowing what to expect. At 2:58pm, Dominic David Ellis made his
anticipated arrival into the world, and before Shawn and Hannah could get a good
chance to appreciate the moment, Dominic was immediately taken off to the NICU,
to begin his journey. Dominics first 24 hours were difficult and critical to his
survival, and while Hannah was being cared for post-surgery, Shawn was bedside
with Dominic for his first hours.

Weighing in at 3105 grams, Dominic was a heavy-weight amongst other preemies
in the NICU. It was clear at this point that Dominic would have a long road ahead,
just to be able to go home he would have to overcome so much. The following days
were spent with Shawn and Hannah by Dominics side from 7am to 11pm, and
family members came to visit them in the NICU. Dominic was attached to a plethora
of cables and sensors along with various forms of breathing and feeding support. He
was unable to fully breath on his own, and had to be tube-fed as he was not ready to
attempt breast-feeding yet, this would have to wait. During these critical days with
Dominic hanging on in the NICU, further testing had been done, and eventually new
information was discovered. One of the lead doctors for the NICU team approached
Shawn and Hannah to share the sad news, they believed Dominic was suffering from
a rare metabolic disorder, however the testing would need to be duplicated in the
United States, requiring a long wait for an answer. Until the results were validated,
Shawn and Hannah had to carry on with Dominics care at the forefront of their
minds. Days after Dominic was born, Shawn was sent back home to Vernon to have

his wrist surgery. Against doctors orders, Shawn left 2 days later and drove back to
Vancouver to be with his family. After weeks in the NICU, Dominic began to show
some signs of fight. He was opening his eyes and looking around, getting snuggles
from Mom and Dad, and eventually started bottle and breast-feeding. This was the
crucial step to being sent home. Once Dominic was able to breast-feed, or bottle-feed
his requirements then they felt comfortable allowing him to go back home. A week
or so into August, the doctors gave Shawn and Hannah the good news that they were
releasing Dominic, and would transfer him home to Vernon where he would spend
more time in the hospital before finally going home with Mom and Dad.

So after months of being stuck in Vancouver, never really knowing what was
happening next, Shawn and Hannah finally got to go home, but more importantly
with their son Dominic. BC Childrens flew Dominic to Vernon, while Shawn and
Hannah had to make the drive back, eager to meet Dominic at the hospital in
Vernon. The following weeks were spent in the pediatric ward in Vernons Hospital,
working on his feeding. Dominic could not be released until he could demonstrate
the ability to feed for at least 24 hours without tube feeding, so totally dependent on
either bottle or breast-feeding. About 10 days later, Dominic was feeding on his
own, and even though some development delays were already beginning to show, it
seemed as if Dominic would be sent home with his family.

For the following couple months, Shawn, Hannah and Dominic spent time as a family
in their little Vernon townhome. Infant development specialists would come by the
home to provide guidance and do assessments on Dominics development, and
monitor his progress. While it seemed like things might actually be ok, and Dominic
might not be facing as serious of a situation as they were being led to believe, things
took a very sudden change when they received a phone call from the Bio Chemical
Diseases team at BC Childrens hospital. Dr. Salvarinova, who had been assigned to
Dominic, called to let them know that they were almost 100% certain they identified
Dominics condition, but would require special genetic testing on blood work from

both Shawn and Hannah to confirm. After even more testing, a meeting was set for
October 2012, in Vancouver to meet with Dr. Salvarinova and her team to review the
results. At this point, the majority of conditions/disorders had been eliminated, and
the remaining few were all on the bad to severe side of the scale. So Shawn and
Hannah knew that the news they would receive wouldnt be favorable, in fact it was
a matter of how bad the bad news would be. During that meeting on October, Dr.
Salvarinova presented Shawn and Hannah with the findings on the testing. Dominic
had been diagnosed with an extremely rare metabolic disorder, which has many
levels of severity. Unfortunately Dominic was on the absolute worst side of the scale,
a Lysosomal Storage Disorder within the Metabolic disorders category. The
prognosis was poor, as the condition comes with an average lifespan of 13 months,
with only about 35 documented cases in history, Dominic being only the second in
Canada ever. Looking ahead at 13 months was not something they were optimistic
about, given the outcome. A shocked and brokenhearted Shawn and Hannah were
left to consider What next?

The answer to Whats next, would not come immediately, as it took time for the
information to fully absorb and become a reality. The answer would however come
months later, during some additional testing. Shawn, Hannah, and Dominic spent
their first family holidays together at home in Vernon. Up to this point, Dominic was
healthy, but clearly not developing like normal babies would, as even the basic
functions like holding up his head or reaching for toys were not happening. It was
clear Dominic would be requiring ongoing support from Infant Development, and
Shawn and Hannah were prepared to invest whatever time and money to make this
happen.

April 2013 brought them back to Vancouver for some additional testing, specifically
focusing on his eating/swallowing. A routine feeding study was performed just to
ensure Dominic was swallowing ok and there were no issues. Unfortunately again,
nothing proved to be routine as the testing very quickly was stopped due to Dominic
aspirating terribly. Over half of what Dominic was swallowing wasnt actually
making its way to his stomach; it was going into his lungs, which is obviously
dangerous. This clearly meant one thing, Dominic would need to be tube fed full
time.






This was very tough for both Shawn and Hannah to accept, as they would no longer
be able to bond with him during feeding. It would all be handled by a bag and
machine moving forward, which was a difficult image to come to terms with, but
ultimately Shawn and Hannah were equally committed to making sure Dominic
received the best care. So it this meant that this would have to be their new reality
then that was going to be ok. This recent change also made one thing very clear,
Dominic needed to be in Vancouver to get the best care, as Vernon doesnt have any
pediatric specialists that they would have needed. So, it was decided that Shawn and
Hannah would have to move to Vancouver, and Michelle graciously opened her
doors to Shawn, Hannah, and Dominic to have a place to stay. Shawn left back for
Vernon, and over a week he packed up all their possessions, put 90% of what they
owned into storage, and brought out their beds and clothes and a few personal
items to try and get settled in their new home.

By the end of April, everyone was settled, and it was time for everyone to start
building a new routine. Learning to navigate the days with Dominics very specific
feeding schedule took some time to adjust, but it wasnt long before Shawn and
Hannah were comfortable with the new changes. At this time, both of them were off
work, Hannahs Maternity leave was expired, Shawns WCB case was closed, so he
had to find work immediately to help support his little family. Fortunately Shawn
landed a part time job with Shaw in the customer service call centre, and while not
his ideal job it did get him generating income right away. Not too long after it
seemed everything had settled in, Dominic became very sick with pneumonia. This
resulted in a 2-week admission to BC Childrens. Unfortunately, this was the first of
6 back-to-back bouts with pneumonia for Dominic, which resulted in many weeks in
the hospital with mom and dad by his side. Shawn missed significant time from
work, which came at a high cost, as all his time off with unpaid as he was only a part
time associate. After these multiple admissions, Shawn and Hannah approached the
doctors to ask why he was getting pneumonia so often, especially since he was tube
fed which was supposed to eliminate this from happening. The feeding tube Dominic
was using was called an NG, meaning the tube goes down the nose and into this
stomach. For whatever reason Dominic was refluxing his milk up, which then went
down into his lungs. So after a long conversation on other options, they settled to try

a new tube called an NJ, which runs further past the stomach into the intestine. This
would 100% stop any reflux as there would be nowhere for the food to go. This idea
ended up being a correct one, because Dominic immediately responded better to the
new tube, and was not getting sick again.

After this, things seemed to stabilize for Dominic in terms on his health. By now he
had already celebrated 2 birthdays, which was far beyond what anyone would have
expected. But like in the past, stable periods always led the way to very unstable
periods. When 2015 rolled around, no one could have possibly anticipated the year
that was to come. The New Year came by, with hopes of a healthy and happy year,
but by February it was clear that would not be the case. At the start of February,
Dominic became very sick, very quickly. After a day of an extremely high fever, and
escalating concerns with his breathing, Shawn and Hannah immediately brought
Dominic to the Hospital. Along the drive, Dominic stopped breathing for a few
moments, and the reality set it that this was serious. Upon arriving to the emergency
room, they were immediately rushed into a trauma room, where a team of
doctors/nurses/respiratory therapists/pharmacists/ and other support staff
swarmed Dominic while a stunned Shawn and Hannah stood by in complete shock.
Not to long after they were introduced to Dr. Pittfield, the Doctor in charge of the
ICU. He immediately identified Dominics breathing as being at risk and put him on a
special breathing machine called a Bi-Pap, which does the inflating and deflating of
the lungs with controlled pressure via a mask, as Dominic was too weak to do this
on his own now. Then began a long 2 week admission in ICU, as Dominic held on for
his little life with the help of a machine, and loving parents who never left his side.
Sleeping on the floor beside Dominic, Shawn and Hannah refused to leave him
during his time in ICU. Shawn continued to miss significant time from work, but
there was no other place he could be but with his son. Eventually just over 2 weeks
later, Dominic had recovered from what was another bout of pneumonia, and was
able to breathe on his own well enough that they were sent home.

Obviously grateful to make it out of such a scary situation, Shawn and Hannah
continued to do everything they could to keep Dominic healthy and happy at home,
but once again things changed very quickly. Barely a month after being home from
the ICU, Dominic became very sick again with the same symptoms, and once again
they were rushed back to the hospital. Like a bad dream or case of Dj vu, Dominic
was admitted back to the ICU for another long run. Shawn and Hannah were there
24 hours with him again, just trying to be as comforting to him as they could.

During this second ICU stay Dominic came seconds to passing away on one specific
occasion, which required some intervention to get him breathing again. It was
starting to look like this would be an ongoing challenge for them all, as the same
problems were repeating themselves quickly and often. After another 15-16 days,
Dominic was release again, however they were sent to Canuck Place for some
transition care, as Dominic was still not 100%, but off breathing support, only
needing oxygen. So the family spent a beautiful Easter with the staff and volunteers
at Canuck Place and had a special time with Dominic.

Back home again, Shawn and Hannah at this point were just waiting for the next
curve ball to be thrown their way, and once again they would not have to wait that
long. April came, and with it so did another visit to the ICU for Dominic. It was clear
his little body was just not strong enough to fight anything on his own, and his
breathing suffered significantly because of this. Another 15-16 days in ICU, with
another close call on the day before they were released again, led to another visit to
Canuck Place for additional care. It was starting to look like Dominic might not make
his 3rd birthday, even though they were getting close. 3 ICU visits in 3 months really
took a lot out of Dominic, but also Shawn and Hannah. Financially/Emotionally it
drained them. Every day in the ICU costs about $100 for the two of them to cover
parking, and food. Those 3 months ran a total of around 45 days, so with Shawn
being off work again, it really put a significant strain on them just to stay above
water. Fortunately living with Michelle saved them in their living expenses, and
Michelle was always wiling to help financially when she could.

The summer months brought some much needed peace and stability for their little
family. Shawn eventually went off work on EI, to focus on family, with his work
promising his job back when he was ready. With Dominic growing, and his needs
becoming increasingly difficult, it was clear that the current living conditions were
not suitable, as Michelle was living in a 2 story unit, with 2 additional sets of stairs to
get up. Since Dominic is completely disabled and cannot support himself, carrying a
3 year old up so many stairs was proving to be difficult and dangerous. So Shawn
and Hannah searched around, and were able to find a ground level apartment only
blocks away from Michelles. The cost would be a factor as they were on single
income, with some government support for Dominics disabilities, but they were
able to make it work by making sacrifices, something Shawn and Hannah had
become quite accustomed to. So Shawn was able to drive out to Vernon and bring
everything they had been paying to keep in storage over the years, and once again
have their own space with their own possessions.

Fall started to roll around, and come October it looked like the cycle was starting
once again. Dominic fell very ill again, and the 3 of them spend another 2 weeks in
ICU over Thanksgiving. But, like every other time before, Dominic fought through,
with mom and dad by his side, never giving up hope. With Shawns EI ending
shortly, he approached his work and was able to be reinstated for the end of
December. Everyone was hoping that things would level out, and go back to a nice
regular routing. But once again, only a few weeks later, Dominic became ill again
which brought everyone back to the hospital for yet another stay. After another long
haul, Dominic continued to fight on and everyone got to go back home before the
end of the month. After getting Dominic home, it was clear he was not the same
person. The years of repeated fights with pneumonia (10-11 confirmed) had taken a
significant toll on his body, and it was clear he was not recovering back to his
previous self. Now requiring 24-hour oxygen, things changed drastically again.
Taking Dominic out in the past was hard enough just with feeding tubes and
machines, but now with oxygen being required, it really showed how hard things
were going to be moving forward again.

Over the last 4 years, Shawn and Hannah have dedicated 100% of themselves to
caring for Dominic. Their common mission along the way has always been to
provide Dominic with the best life he deserves. Comfort, Love, Laugher, these are
the foundations of their approach, and the doctors certainly think this is whats
allowed Dominic to be here as long as he has. No other child with Dominics
condition has lived to Dominics current age of 3 years 8 months, and with July fast
approaching, Shawn and Hannah are thrilled to think they will be hopefully
celebrating a 4th birthday with their very special son. If you think of the word
sacrifice, Shawn and Hannah certainly personify the meaning of the word. These 4
years have meant that everything else in their lives have been placed on hold.
Careers/vacations/date nights/friends/etc have all been placed on the backburner, so they can focus their attention solely on Dominic. Realizing what a special
gift the moment holds, they have done their best to simply live in the moment and
be grateful for the support they have received along the way from so many

wonderful people. While no one knows how much longer Dominic has, the one thing
we know for certain is he will continue to be loved by so many, and so long as he is
here, Shawn and Hannah will always put him ahead of everything else. As Dominic
continues to grow, so will his needs. Shawn and Hannah have had to constantly
adjust to a new normal every time Dominics condition changes, and nothing has
been harder for them than watching his health slowly decline as his condition
progresses. There will never be a cure, or any type of trials or medication to make
things better for Dominic, its simply a matter of time before the condition eventually
takes him away, but until then both Shawn and Hannah refuse to stop fighting to
give him the most comfortable and loving life he could ever know. This proves how
completely selfless the two of them are, and people like them truly deserve nothing
but love and support as they navigate the rough tides of special need parenting.