<div>Many of you know Alex Smulevich and Jen Waknine from growing up, through school, work or through the community.


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<div>They were blessed with a beautiful baby boy 1 year ago. Liam Mimoun. 


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<div>Liam is just 1 year old, but he has already had to go through more challenges than most of us would be able to handle in a lifetime.


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<div>Liam was born premature on March 2nd, 2022 weighing 6 Pounds and 6 Ounces. Shortly after his Brit Milah, Liam began to have medical complications and every day it was something new - affecting a different part of his body each time with no explanation in sight. Shortly thereafter, his parents - Alex and Jennifer (Waknine) Smulevich, began to realize that there has to be something bigger going on because it was not normal that every day there was a new diagnosis related to different organs in the body, coupled with his unique physical features, weakness and eye movements.


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<div>The first diagnosis was an abnormal thyroid level which could have been managed by medicine, however, that was only the tip of the iceberg. Within a few weeks, various Doctors had diagnosed Liam with multiple congenital abnormalities including two holes in his heart, Duplex kidney, Hyperinsulinism, Sick euthyroid, High arched palate and other issues that cause learning disabilities and developmental delays.


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<div>Given the various diagnoses and conflicting reports from numerous medical professionals, a decision was made to conduct genetic testing to confirm, once and for all, what was really going on. The waiting period to obtain results was gut wrenching and nerve-wracking, but the day finally came. The Genetic Doctor advised that Liam has Kabuki Syndrome. Alex and Jen's hearts were crushed and they immediately began crying and asking the typical questions of "What is Kabuki?", "What does this mean?", "Why Him"? "Why Us"? "What did he do to deserve this?" "Will he suffer?"


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<div>At that time, Alex and Jen had no idea what Kabuki was nor had they ever heard of it. Unfortunately, it is an extremely rare genetic disorder that affects many parts of the body and ultimately causes a lifetime of medical complications coupled with developmental issues - physically and mentally. It affects less than 100 births in the US per year for which there is no cure, only therapy and treatments with various success.


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<div>Alex and Jenn are completely broken over the diagnosis but remain strong and optimistic that they will work tirelessly to give Liam a normal life and make every effort possible to see to it that he succeeds. Despite the optimism, reality frequently sets in, and they are experiencing unimaginable pain watching Liam suffer every minute of every day. He has slept in a hospital room more nights of his life than he has slept in his home. Alex and Jen have unfortunately become regulars at the hospital, similarly sleeping more nights away from their home and other daughter than in their home.


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<div>Liam has a 3-year-old big sister. Her name is Noa. Although she is only three years old and it is difficult for her to understand what is going on, she has learned that her brother is "different" and she cannot play with him the same way she has played with her baby cousins and is confused that her baby brother is constantly screaming and crying in pain with no end in sight and nothing that she can do to comfort him or cheer him up.


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<div>Liam and his family need our help. Unfortunately, Alex and Jen cannot manage this process alone. Their daily routine involves visiting Doctors almost daily for various types of therapies and treatments, including physical, occupational, feeding and otherwise, to ensure that Liam's development moves along as best as possible despite the challenges he currently faces and will continue to face. It is really a never-ending cycle of Doctors, hospitals and therapy sessions.


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<div>Alex and Jenn have been working with The Kennedy Krieger Institute in Maryland, where Dr. Jaqueline Harris leads a team of Pediatric Neurologists in their work on the Kabuki Syndrome and Dr Olaf Boadamer (and team) from the Roya Kabuki Program at Boston Children’s Hospital.

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<div>Dr. Harris and Dr. Bodamer are at the forefront of this syndrome and will hopefully be working together with Liam's team of local Doctors in South Florida to continue to monitor Liam and give him the best medical attention.


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<div>As you can imagine, the costs of many of these procedures and therapies are incredibly expensive and not covered by Insurance. Alex and Jen need full-time help to work with them to ensure that Liam's medical follow-ups (which are daily) are performed routinely and on schedule both in the offices of medical professionals but also at home. Many of the accommodations that Liam needs are not covered by insurance, and the costs continue to skyrocket with no end in sight.


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<div>We know that this is going to be a lifelong journey where constant medical care and attention will be required. As such, we know that these funds will not last forever nor will they "fix the problem" or bring about a cure to Liam's diagnosis. However, what we also know is that without the assistance of all of you, Alex and Jenn will not be able to afford to give Liam the medical attention he needs to get ahead of the curve and give Liam the best fighting chance he has in minimizing the long term issues of both physical and mental development.


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<div>This fundraiser has been set up as a trust called The Liam Smulevich Supplemental Needs Trust to ensure that the funds are used as defined within the Trust Documents for Liam's Life and Treatment of Liam's medical diagnosis. Further, in doing so, it will allow Liam to continue to receive the benefits of Medicaid for certain things that are not covered by Insurance.


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<div>I understand the Goal is large; however, with the help of G-d, this is not only a realistic goal but a necessary goal to ensure that Liam has the best fighting chance to receive the best medical attention and care out there for his immediate future. I urge each and everyone who receives this request to give "until it hurts," as is often used in the fundraising world.


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<div>Hashem runs the world and often we are confused by the cards we are dealt but we are not given cards we cannot handle.


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<div>Together, with the help of G-d, as a family and community, we will work together to support the Smulevich (Waknine) family during these difficult times. For those who cannot support financially, please simply send a message of support to the family to let them know they are not alone.


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<div>If you have any questions regarding this or want to reach out to the parents directly, please contact them via facebook, instagram, or email (Liam.Smulevich_@_gmail).


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<div>FOLLOW LIAM'S JOURNEY ON INSTAGRAM: <a href="https://instagram.com/liams_journey_kabuki" target="_blank" rel="noreferrer noopener">instagram.com/liams_journey_kabuki</a>


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Lets Help Baby Liam Smulevich BEAT KABUKI SYNDROME

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Lets Help Baby Liam Smulevich BEAT KABUKI SYNDROME

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