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Living With… Interferonopathy

Living With… Interferonopathy

by Kierra Perry, Special Tomato Social Media Consultant

#iWill

Meet Will, an amiable four year old with curiosity big as the mountains and eyes as bright as the sky.

Mom’s like Melissa all echo a similar message: It can be tough to navigate the unique challenges of raising a child with a complex medical condition. There are no instruction manuals for raising your child (though that would be nice!) And for children like Will with a complex condition, a tempestuous layer of navigation is added to the mix.

Melissa did what many mothers innately do- she made a promise to always put her children first. What she didn’t expect was how impassioned her surrounding community would become after catching a glimpse into what this promise looks like for Will.

For Will, this promise brings unconditional love, a sky-high journey across the country, and (you guessed it!)- inspirational guacamole.

If one of your New Year's resolutions is to smile more, I’d like to introduce you to our special friend Mr. Will Hagar. Will lives a full and loving life in the adventurous and outdoorsy state of Maine. While he loves adventuring everywhere and anywhere with mom Melissa, Will’s travels stretch long and far from home.

Will has an autoimmune inflammatory condition that affects his brain. While it’s known that Will has something called interferonopathy, countless doctors and specialists have been unable to provide a comprehensive diagnosis for Will’s condition. Will’s interferonopathy means that his body over-produces interferons. When we get sick with a viral infection, our interferons are proteins that combat distress caused by the virus. However, when this mechanism is happening all the time, it can be very exhausting on the body; borrowing energy from places like Will’s muscles and brain.

With high-spirits, Will is growing up and fighting harder than most kids his age.

Unfortunately, this can be tough for others to see when some of Will’s challenges appear unassuming. Even so, there’s only one way to treat any child braving adversity- and that’s with an open heart. And oh boy, does Will know how to slip his way into your heart!

To no one's surprise, not many things in life are universally agreeable. However, it’s unequivocal that every child deserves freedom. The freedom to live comfortably and to be blessed with experiencing every elation of their surrounding world. One of Will’s first memories with freedom came shortly after getting settled into his very first Special Tomato Soft-Touch Sitter. Melissa stumbled across Special Tomato after endlessly searching for supportive seating to help with Will’s muscle tone. Luckily, she finally found our line of Soft-Touch Sitters after spending thousands of dollars on other seating support systems that just didn’t hold up to their claims. It’s the experiences like being able to use Will’s Special Tomato Sitter to bring him on bike rides, Melissa states, that allow Will to experience the beautifully rare aspect of life that is freedom.

For Melissa, making the best out of every situation is one of her goals for Will. When taking routine trips to the Children’s Hospital of Philadelphia for care, Will retires the bike wheels in exchange for wings. In doing so, Will takes on the 500+mile trip like the V.I.P. he is.

Traveling long distances can be very taxing on children with complex conditions, which is why a non-profit called Patient Airlift Services eagerly sponsors Will’s journey towards treatment. These free and private plane rides back and forth from Maine to Philly means there’s a lesser risk for compromising the progress Will has made in fighting his condition.

Ultimately, there are activities that challenge Will everyday. Fortunately, Melissa is passionate about instilling the message in all her children to “ Never give up.” She iterates, “If there is something you can’t do- find another way. Make another way”.

And for Will she shares, “ If Will can’t do it, I will. ”

When Will curiously looks with wide eyes over to some flowers he cannot pick and smell himself, Melissa is happy to guide Will’s hand to experience the soft touch of nature. To her, it’s simple. “ If Will can’t, I will.”

What began as a comforting “I will” message about inclusion and experience soon grabbed Melissa’s surrounding community by the heart strings.

When Will struggles to eat, neighbors are eager to make some of Will’s favorite food (guacamole!) and have even shared the message by inscribing “We Will” on the special delivery.

In the new year, Melissa inspires her audience by sharing what it means to live by selfless inspiration. In this new year, we wish continuing health and joy to Will and the entire Hagar family.

“Where there is a Will, there is a way.”

Special Tomato deeply appreciates Melissa and the whole Hagar family for allowing us to share a piece of Will’s journey with us. You too can follow their journey on Facebook and Instagram: @iwill4will



At Special Tomato, we aim to innovate products as resilient as the children who use them. If you have a #SpecialTomatoStory like Adam you’d like to share, email us at connect@specialtomato.com.