I wish to have a hot tub

Spencer

4

rare genetic disorder

Spencer Hot Tub Wish_Hero

Spencer’s Wish provides joy heard around the neighborhood

“Spencer is a spunky little “forever toddler” who loves to jump on her trampoline, swim, play in water, and run around the yard or playground. She will charm you with her happy flaps and

Erin

Wish Mom

When Spencer was born, she was immediately whisked away to the NICU for breathing problems. From there, she had several ear infections, unexplainable rashes, severe food allergies, and other complications. By age two, she still was not talking despite speech therapy and was found to have mild hearing loss. The road to diagnosis was challenging and resulted in many intense google searches by her family. However, on May 15, 2022, Spencer’s mom, Erin, was scrolling through her social media feed when a video made her stop mid-scroll. A video of a mother sharing her daughter’s medical journey with a diagnosis called Sanfilippo Syndrome caused Erin to immediately recognize this in her own daughter. According to Erin, “not only did both girls stare into space, but their facial features were uncanny.” After reading the caption of the video and researching Sanfilippo, Erin knew she had the answer she had been looking for. They sought genetic testing and after a few months, they confirmed her diagnosis. Sanfilippo Syndrome Type A is a degenerative neurogenic disorder commonly called childhood Alzheimer's due to similarities in regression and how it impacts the brain and body. 

After the diagnosis, Spencer’s family was told to “take her home, love her, and give her the best life [that they can].” They heard about Make-A-Wish through their geneticist who recommended Spencer for a wish experience. After a weekend at Erin’s parents’ cabin with an inflatable hot tub brought an insurmountable amount of joy to Spencer, her family knew that a hot tub of her own would be the perfect wish for her. Not only does the hot tub bring happy splashes, giggles and screams of delight heard throughout the neighborhood, it also helps to relax her muscles and sore joints. The hot tub helps to calm her and helps her forget that she is in pain, according to her mom Erin. “Knowing what she was going to face in life, we knew that she would love a place to splash in the water and relax for years to come.” 

“Our absolute favorite thing is watching Spencer grab her puddle jumper, walk over to the patio door, knock on it and lift her shirt “telling” us that she is ready to go in her hot tub

Erin

Wish Mom

Spencer’s wish experience is a key way for her family to continue to provide her with a full life of adventure. According to Erin, a wish “brings hope and joy in unbearably difficult circumstances… the happiness a wish brings is invaluable.” Spencer’s wish will be one that continues to help her in her medical journey and will provide an outlet to continue to connect with her loved ones.