Atticus Gamble came into this world like most other newborns, happy and healthy. His mother, Samantha, experienced a “normal” pregnancy and birth, and was ready to take on this new chapter with her husband Roman.

The first couple of months were spent doting on the new addition to their family. But Samantha noticed that Atticus wasn’t hitting the standard milestones. He was having trouble lifting his head and performing controlled movements.

One week, while visiting Roman’s family, Samantha had an inkling that Atticus was losing his hearing. She also noticed that he was having difficulty lifting his head. However, family and friends weren’t concerned, being that every baby has their own developmental journey.

She even scheduled a doctor’s visit, but the nurse wasn’t concerned. Still, Samantha had a gut feeling that something was off, and filled her spare time reading every child development book she could get her hands on.

Throughout each doctor and therapist appointment, Atticus remained resilient and happy. He continued enjoying the things he loved, music, horror movies, animals, and his favorite toy, Sophie la Girafe.

Finally, at four months Atticus was diagnosed with hyptonia. In other words, he had decreased muscle tone.Then, at five months, they saw a developmental specialist, who again confirmed it was in fact hypotonia.

Hypotonia made it nearly impossible for Atticus to have tummy time, as he didn’t have the neck strength to lift his head. But by six months it got progressively worse, for Atticus couldn’t roll over or bear his weight on his feet. Samantha and Roman were getting increasingly worried and decided to see neurologist Dr. Matthews.

Dr. Matthews performed EEGs and MRIs to rule out Cerebral Palsy and Cystic Fibrosis, and they came back clear. Samantha and Roman were relieved and hoped that Atticus merely had congenital hypotonia, as they could work with a physical therapist to improve his movement.

So, that is what they did. Atticus regularly saw a physical therapist to reach his “inch stones” as his disorder made it impossible to reach the typical benchmarks. They celebrated every lift, roll, and controlled movement that Atticus could muster.

Throughout each doctor and therapist appointment, Atticus remained resilient and happy. He continued enjoying the things he loved, music, horror movies, animals, and his favorite toy, Sophie la Girafe. Sophie went to every doctor visit and provided comfort to Atticus during uncomfortable procedures.

But it wasn’t long before Atticus showed regression and could no longer hold his favorite toy.

Atticus was referred to an eye doctor, where they found what is known as a cherry red spot. This spot is linked to four progressive metabolic diseases, all of which attack the nervous system. But Atticus was diagnosed specifically with Tay-Sachs, a rare, inherited disease that targets the nervous system, commonly found in small children. This meant that Atticus had an estimated 2-3 years left.

Not too long after this devastating diagnosis, the COVID pandemic happened. With Atticus’ compromised immune and respiratory system, he fell ill constantly and had to attend his physical therapy sessions virtually. At six months he had to have tubes placed in his ears to release the built up fluids, improving his hearing a little but not permanently.

And at 9 months, Atticus hit an unexpected inch stone. He made Sophie squeak.

Everyday Atticus grew weaker and weaker, losing his vision, most of his hearing, the ability to move, and eventually his ability to eat and breathe on his own. Towards the end he required a gastrostomy tube and oxygen mask.

Still Atticus did not show despair. He still attended regular dance parties with mom and dad where he would giggle and get the “happy slappies.” He went outside, splashed in the pool, and loved on his dogs and cats.

Instead of giving up, he learned how to adapt his lifestyle so he could continue to enjoy his favorite activities. E-Z grips were attached to his favorite toys so Atticus could play again without relying on his grip strength.

And at 9 months, Atticus hit an unexpected inch stone. He made Sophie squeak. Samantha and Roman were beyond themselves as they watched Atticus giggle with delight after he finally made his favorite toy squeak.

According to Samantha, Sophie was one of the first baby toys that she bought for Atticus, at her sister’s recommendation. And it was love at first sight. Sophie became Atticus’ playmate and comfort toy. She was right next to him during every doctor’s visit, therapy session, and recovery period.

That is why on February 14th, 2021 Sophie was cremated with Atticus Gamble. It is only fitting that a boy who has shown so much love, should pass on Valentine’s Day.

And after his passing, Roman and Samantha decided to enter Atticus in Vulli’s annual photo contest. While Atticus did not win, he caught the attention of Vulli and was sent a specialized Sophie la Girafe teether with his name engraved on her leg.

To the Gamble family, Sophie is more than just a toy. She represents Atticus’ bravery, resilience, and incredible ability to remain joyful during trying times. They continue spreading awareness about Tay-Sachs and hope to one day create a foundation.

Thank you to Samantha and Roman for sharing you and your son’s story, and thank you Atticus for letting us be in your incredible life.

Roman and Samantha Gamble also want to give special thanks to the amazing people they met during Atticus’ journey.

Thank you to:

• Katherine Kaufman for the diagnosis and being there for us during the entire process.
• Katherine Matthews for sharing your knowledge and being straightforward.
• Abimbola Olayinka for keeping Atticus comfortable through his most difficult times.
• The entire Cedar Rapids Compassus hospice team for being there for Atticus and treating him as your own. A special thanks goes to Denise Campbell, Atticus’ primary hospice nurse who went above and beyond to help him enjoy everything he could.
• Kris Baldwin and Grant Wood Early Access, Atticus’ Physical Therapist, for working so hard to help him reach every inch stone and helping him adapt and enjoy life
• National Tay-Sachs and Associated Diseases (NTSAD) foundation for all of their support, networking, and resources.

Warmly,

Sophie la Girafe, USA