Stand with Alex in His Battle with SLOS

Hi, my name is Deanna and I’m part of Meghan’s work family.

At roughly 22 weeks pregnant, Meghan found out that Alex was diagnosed with SLOS (Smith-Lemli-Opitz-Syndrome). SLOS is a rare genetic condition that is caused by gene mutation. Problems associated with SLOS are congenital including slow growth, a small head, intellectual disability, and short life expectancy. SLOS affects 1 in 20,000 to 1 in 60,000 babies in the US, there is little to no research on treatments and there is currently no cure.

Alex has reached MANY milestones and surpassed expectations of his providers. Alex is an energetic, Hulk loving 9-year-old. He is active in special Olympics bowling and always has a smile on his face!

Last week, Alex was admitted in the hospital due to losing blood flow to his legs and stomach being filled with air, causing pain and his liver to be pushed up against his neck. He was discharged Saturday (06/01) evening and home for 2 nights before Meghan quickly rushed him back to the ER with more air in his stomach. This time, Alex is also very scared and uncomfortable.

Within the last week, they have visited 3 well-known hospitals in the Chicagoland area and doctors are still searching for answers.

At this time, Meghan and Jason are suffering mentally, physically, and financially. Jason recently had an accident at work to where he is unable to return for an unknown time. Meghan has been with Alex consistently in and out of the hospital - causing her to use all of her PTO at work. This results in no income for their beautiful family of 6.

Meghan, Jason, Alivia, Addison, and Aubrie are Alex’s biggest supporters and are always rooting him on! It is unknown how long they will be on this rollercoaster and we are looking to help in any way we can.

Please consider donating any amount helps significantly! ❤️