Hello everyone! Meet our son Hayden!
Hayden is a sweet, funny, resilient, and very
energetic 16 year old boy. In 2012, Hayden was diagnosed with a rare
form of severe refractory Epilepsy with CSWS (continuous spikes and
waves during slow sleep) as well as frontal lobe epilepsy. The two
types of epilepsy affect his development, speech, behaviour,
coordination, walking, and so much more! His epilepsy has caused
sensory processing issues, Global Developmental Delay, and Mild
Intellectual Disability. Due to the medications he was on, he has a
lowered immune system, which causes him to be susceptible to many
illnesses. He spends countless hours at the Children's Hospital of
Eastern Ontario (CHEO), whether it be for appointments or
hospitalizations. Thankfully, he loves going there (asks for his room
as soon as we enter the hospital) and has an amazing team of nurses
and doctors who work with him and support both him and our family!
Hayden has gone through countless hours of doctor's
appointments, surgeries, hospital stays, and testing and has been on
more than 26 medications to try to help control his seizures. In 2015,
it was determined that he was no longer a candidate for brain surgery.
Hayden has spent several stays in the ICU fighting for his life, but
he is incredibly strong and resilient and has proven everyone wrong
time and time again.
Hayden has anywhere from 25 to 100 seizures a day.
In 2016, we, along with his medical team, decided to implant a Vagal
Nerve Stimulator (VNS) in his chest in hopes of decreasing the
severity and frequency of his seizures. Fast forward to now, and
although he still has seizures daily, the seizures have decreased significantly!
Due to the particular forms of epilepsy Hayden has,
his sense of danger and safety is incredibly at risk and impacted.
Hayden has absolutely no fear or concept of danger and has many times
bolted and run off (typically because something comes into his mind
that he wants, for example, his hat at home or a book at the library),
and he bolts to get whatever it is he has thought about. This is an
incredible concern for us as his safety is of utmost importance.
In 2019, Hayden had his first service dog K4Paws
Glory placed with him. This changed not only Hayden’s life
significantly, but also ours as this absolutely amazing pup watched
over his every move and would alert to his seizures. This gave us the
ability to actually rest at night, knowing that this angel was
watching over him while he slept. Unfortunately, we lost Glory due to
a rare illness at a very young age later in 2023. Our family was
devastated however we received continued support from K4Paws and in
2024, K4Paws Doug, another service dog was matched and placed with
Hayden. Doug has been amazing and helps to calm Hayden when he is
having tough times, and he will apply deep pressure therapy to ground
him. Watching these two bond over the past year has been an absolute
blessing, and we cannot wait to see where their story takes them together!
Hayden's particular form of epilepsy with CSWS puts
him at a greater risk when asleep, as his brain is incredibly active
while sleeping, and many of his seizures occur during sleep. Having a
seizure response dog has been very comforting for not only Hayden but
the whole family, as he stays with Hayden at nighttime. Hayden is at a
higher risk for SUDEP (Sudden Unexpected Death in Epilepsy), which
really worries us at nighttime time so having Doug watch over him at
night helps to alleviate some of that worry.
Our entire family has been incredibly blessed and
thankful to be part of the K4Paws Family!
Kingston 4 Paws is a Registered Canadian Charity;
however, they receive no government funding for their program. While
the dogs are provided at no cost to the families who
are accepted to the program, we are asked to assist with fundraising
to help offset the costs of acquiring and training these amazing
Service Dogs which can total approximately $25,000.
We are asking that you make a donation in Hayden's
name to help raise the funds required to train another future
service dog to help another family. It has been amazing for
our ninja warrior to have the backup he needs to live a fun and
adventurous life that every little boy deserves to live! Thank you for
embarking on this incredible journey with us and supporting our little warrior!
With Love and Gratitude,
Nathan and Megan Albertini
