Hello everyone! Meet our son Hayden!
Hayden is a sweet, funny, resilient, and very energetic 8 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
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 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 to implant a
Vagal Nerve Stimulator (VNS) in his chest in hopes of decreasing the
severity and frequency of his seizures. Fast forward a year and his
seizures have started to decrease!
Due to the particular forms of epilepsy Hayden has, his sense of
danger and safety are incredibly at risk and impacted. Hayden has
absolutely no fear or concept of danger and has many times bolted and
ran 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 worry and concern for us as his safety is of utmost
importance. A service dog will help keep Hayden safe as the dog will
be tethered to him.The seizure response service dog will also help
greatly by responding to Hayden's seizures and possibly even alerting
to them! The service dog will also help be a comfort for him during
his meltdowns and many doctor's appointments or hospital stays.
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
will be very comforting for not only Hayden but the whole family as
the dog will stay with Hayden at night time. Hayden is at a higher
risk for SUDEP (Sudden Unexpected Death in Epilepsy) which really
worries us at night time so having a seizure response dog will help
alleviate some of that fear and worry.
We are incredibly excited and blessed that Hayden has been accepted
on the K4Paws wait list for a seizure response dog!
Kingston 4 Paws is a Registered Canadian Charity, however, they
receive no government funding for their progran. While the dogs are
free to the families who are accepted to the program, we are asked to
fundraise to help offset the cost of training these amazing Service
Dogs which costs approximately $20,000.
We are asking that you make a donation in Hayden's name to help raise
funds required to train a service dog. It will be 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