I’m so inspired by this little guy and his Mom, Tiffany. Thank you for sharing your story with the Facebook world at large. There is a lesson here for all of us. Embrace your life, regardless of the circumstances. Be strong. Be courageous. Make each moment count.
Your legacy will live on sweet boy and your family now has a very special angel watching over them. Love, light and peace to you all.
Tiffany’s words on her page: Tubie2Go
Introducing the little guy that inspired the creation of Tubie2Go – my son Magnus.
Magnus was born in August of 2017… full-term, normal pregnancy, normal delivery. We were blissfully unaware that he would face any challenges. Then, when he was 2 months old, an MRI showed that our beautiful baby boy had congenital brain loss resulting in severe microcephaly.
Following that, we received the devastating news that he is cortically blind with no supposed light perception.
At 6 months old, the first signs of epilepsy emerged. We would eventually be robbed of his smiles as his seizures evolved and progressed. In March of 2019, his feeding abilities regressed and after a month of hospitalization, he had his first feeding tube surgery at The Hospital for Sick Children.
Today, at 4 years old, Magnus is fed exclusively through his feeding tube. Smiles are rare … few and far between … and unsolicited. Developmentally, he is like a newborn and physically the size of an infant due to severe growth hormone deficiency. His hearing is compromised because of the neuro processing issues and he doesn’t seem to respond to sound. He is not mobile but he can almost control his head though he cannot roll over, sit or stand independently.
The reason for his health problems remain undiagnosed despite exhaustive genetic testing and teams of doctors who have been with him on the journey. We remain hopeful for answers and a miracle. We’ve been told that Magnus won’t walk or talk … and for kids like him who are severely neurologically compromised, mortality is very uncertain.
While all this may sound daunting, and it certainly is, the silver lining is that Magnus and I have had the pleasure of meeting some amazing communities of other special needs children and their superhero families while living out our own medical war story.
Tubie2Go is a not-for-profit business, founded shortly after Magnus became a tubie. Our primary mission is to provide Canadian parents with tube feeding children, an affordable and stylish option to feed their tubies on the go.
As the mother of a child with complex care needs, I understand that each child is special, but as parents, we still strive to give our children some sort of ‘normalcy’ in their daily life. My hope is that these backpacks can help do just that. 100% of the proceeds from our backpack sales go to The Hospital for Sick Children in Toronto, Canada – Magnus’ home away from home.
In addition, I also want to reward the people who support our special needs children; from parents who don’t have time for self-care because EVERYTHING we have is invested first in our kids, and to the siblings who concede a bit of their ‘normal’ childhoods every day. Everyone should have something to look forward to.