Answer 4 Alec Benefit Gala at Rosebud Naperville


Alec Jump, son of Julie (McHale) and Kyle Jump, is a 20 month old boy who has had health issues since shortly after he was born. Through months and months of sleepless nights, not eating, and missing milestones, Alec went through many rounds of tests. With symptoms ranging from reflux to GI issues to dysphasia (severe low muscle tone). Alec was finally diagnosed in November 2016 with a form of Leukodystrophy. Leukodystrophy is a Genetic Brain Disorder, which effects brain and motor function, low tone, ability to eat and progress like the typical 20 month old does. At this point, there is no cure, and no real treatment options. Alec isn’t at a point that he can hold a bottle, roll over, sit, talk, or walk. Alec is in therapy weekly with Physical, Occupational and Speech therapy along with consistent appointments with a nutritionist.

Julie and Kyle have done an exceptional job rising up to meet the extreme challenges of this unforeseen situation. If you are fortunate enough to know them, you know that everything they do is with kindness and a smile. There are still tests that need to be run to determine what type of Leukodystrophy Alec has (there are 8). It is critical to determine Alec’s Leukodystrophy type in order to do gene therapy. Insurance only allows certain testing and to get approval for the testing, the union has to get involved. The length of time involved in gaining approval for testing is a big area of concern. Julie and Kyle have moved forward with recent testing that unfortunately insurance hasn’t covered in hopes of getting an answer for Alec. They went to an in-home child care provider, but Alec now requires more 1 on 1, so they have since been required to hire a nanny significantly increasing the cost of childcare. Part of the therapy requires additional medical devices that are necessary for the home, also not all covered by insurance.

In November, Alec will have his first surgery on his eyes to correct the cross eye he has due to the lesions behind them. The money raised will only go towards medical expenses.

Join us on September 13 at Rosebud Naperville. 10% of your check will be donated to the Answer 4 Alec fund!

 

Make your reservation and mention “Answer 4 Alec!”

630-548-9800

 

Follow Alec’s journey here.


Posted 08.10.17


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