Nate the Great (6 yrs old)
Nate is a social butterfly. He absolutely loves people and loves to love - his mom says he's a big flirt! - but his favourite person in the world is his big sister Maya. When Nate isn't watching his girlfriend Ellen DeGeneres on her talk show each day he enjoys listening to music, being outside, story time, watching cars and trucks as they pass and cuddles with his dad Ray. Being non-verbal, Nate uses ASL (American Sign Language) to communicate and is currently working with ErinaokKids on a communication device that will work best for him.
Unfortunately Nate's medical journey hasn't been easy so far. Diagnosed with Global Developmental Delay (non-verbal, non-ambulatory), Partial trisomy 7q , Hydrocephalus. Chiari I malformation, Low Tone, Strabismus, Sialorrhea, Repaired ASD/VSD, Gastroesophageal Reflux Disease, G-tube fed, Scoliosis (mild), Autism, Epilepsy, Cortical Visual Impairment, Alopecia Areata, Chronic and recurrent pneumonia, Asthma and low platelets resulting in frequent nose bleeds, he spends a lot of time in hospitals. Despite all of this, Nate lives life always with a huge smile!
Micah (3 yrs old)
Micah loves Cars, Lightening McQueen, Mickey Mouse, story time, Paw Patrol and especially loves to dance, laugh and cuddle! Singing really loud is one of his talents says mom. Micah enjoys tight hugs as kids with sensory disorder find deep pressure calming, and is a very happy, energetic boy - often putting mom to sleep!
Micah’s life started off difficult with the repair of his Coarctation of Aorta heart surgery at Sick Kids Hospital at 20 hours old. Micah's diagnosis includes Mitral valve Stenosis, Autism, Global Developmental Delay, Cortical visual Impairment, and Micah will have a sedate EEG in two weeks to confirm seizure activity. Micah will also have a sleep study in September to query his difficultly sleeping as he has never slept through the night since birth. Like his older brother Nate, through all of this Micah can give the most comforting hug and smile!
Both boys are followed by the same, Paediatrician, Cardiologist, Ophthalmologist, Neurologist and Otolaryngologists and receive Occupational Therapy, Physical Therapy, Speech Therapy and are awaiting ABA therapy.
Because this inspiring family spends so much of their time in hospitals we wanted to ask Natasha about her experiences.
What has your medical journey been like?
Nate has overcome several surgeries including open heart surgery, several hospitalizations for frequent pneumonias including 4 weeks in the ICU at Sick Kids Hospital last December. Micah has also had heart surgery at birth. Our medical journey has been heartbreaking.
Have you experienced Smilezones?
Yes, both at Credit Valley Hospital and ErinoakKids
With your experiences, what role does the environment play in paediatric health spaces?
It’s instrumental in providing a warm, welcoming and comfortable setting. Where kids get to feel like kids in what could be a very stressful time. I see joy in my boys eyes while admiring Smilezones, which ultimately leads to smiles and blowing kisses; Nate favorite two things to do. As a mom for of two very complex boys... it gives me a moment to stop the worrying and smile.
Are there any memorable moments that stand out to you?
All of our moments in Smilezone have been etched into our memory however, one recent event made its way straight into our hearts. Smile zone celebrity golf tournament. Meeting so many wonderful souls that took their time to give back, they all greeted my family and many others with smiles and kindness. It made my entire family smile and of course blow kisses.
What are some of Nate's favourite activities/distraction when he's in a hospital?
As you can imagine we spend a lot of time in hospitals, Nate enjoys music, watching Ellen DeGeneres on his iPad, visits from the clowns, smiling and blowing kisses to friendly faces.
How has the addition of Smilezones made a difference to your family?
Smilezones has given us a break from our harsh reality. We try to attend the boys appointments as a family when possible to give each other support. Smileszones adds some sunshine to our day!
Do you have any words of encouragement for families who may be going through similar experiences?
If I were to offer an advice it would be....
To Believe and to Love! For us, our faith has carried us through.
Seeing the love in children eyes and knowing they need me to give them the best of my heart, encourages me. I’m not perfect, I have my moments where I cry and ask why. And think back to how close we came to loosing Nate, I think back to the time we got the news about Micah and than...I look into their eyes. I will never fully understand what it’s like in their world but I can try my best to make it as loving and comfortable as possible.
Yes, it does seem like there’s always something going on and always something to worry about... I don’t expect things will ever be easy...maybe just easier some days than others. But one thing that stays consistent in our home is Faith and Love!
You can follow Nate's journey by following "
natethegreatstory
" on instagram. Natasha would like to welcome anyone who wants to learn more, or could use someone to talk to, to reach out to her
here
.
"
Sending big big hugs, smiles and blowing kisses" - Natasha
