Phillip’s parents reached out to A Special Wish Chicago, sharing the intricate medical narrative of their young son’s  journey. At just 6 months old, Phillip displayed alarming signs of developmental regression, prompting a thorough examination. The diagnosis at  Ann and Robert H. Lurie Children's  Hospital revealed Sandhoff Disease, a rare, inherited condition with a devastating impact on the nervous system. This progressive ailment systematically destroys nerve cells in the brain and spinal cord, particularly affecting motor skills in its infantile form.

Phillip has faced numerous in-patient stays and recurring seizure episodes, necessitating a comprehensive approach to his care. His current treatment involves palliative care to enhance comfort, administered by a multidisciplinary team.

Amidst these challenges, Phillip's mother, Kaitlyn, sought assistance from A Special Wish Chicago. The family's foremost desire was to share quality time with Phillip and extended family members. Opting for a meaningful outing, they chose to attend a Chicago Cubs game at Wrigley Field. Their request included the opportunity to stay at a hotel for the weekend, emphasizing the importance of capturing precious moments and creating lasting memories with their son.

A Special Wish Team diligently orchestrated a wish outing for the family, securing Cubs tickets, merchandise, a photo shoot, and a Big Board welcome, with many items generously donated. The family also enjoyed a complimentary stay at the Hotel Zachary and a donated dinner at Swift & Sons Tavern. The collaborative efforts of these venues, along with A Special Wish Chicago , provided Phillip and his family with a unique and memorable experience, allowing them to forge lasting memories despite the challenges they faced.

Holy Cow!

“For most individuals, they never experience rare, and the concept becomes foreign to them. The sleepless nights, weeks long stays in the PICU, and cancelling plans on a whim are just cutting the surface. Beyond all of that, families like ours learn that being rare just means you love and support differently. As we care for our son, simple things like opening his eyes brings so much joy. A giggle or a “coo” can change our mood. Caring for this little one is cherishing life down to the seconds. Taking everything day by day. Through the highs and the lows, never missing a beat."

- Kaitlyn and Zach, Mom and Dad to Phillip

To Phillip's family, your strength and courage in navigating this difficult journey are truly inspiring. A Special Wish Chicago was honored to be part of creating special moments for you. Thank you for allowing us to share in your story.

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