Hey all!! As some of you may know, our son Lukas was recently diagnosed with Barth Syndrome. Which came as a complete shock for our entire family and friends. If you are new to our story, Lukas began showing complications with his heart, while we were on vacation in March of 2019. With that, come a whole lot of other unexpected things that Lukas has unfortunately experienced. Such as Dilated Cardiomyopathy, Neutropenia, Mild Hypotonia and feeding issues. As well as numerous hospitalizations, countless pokes and procedures. Lukas was placed on an NG feeding tube on April 12th, 2019. This was his second hospitalization due to this syndrome. He was diagnosed as failure to thrive, since he was quickly dipping in weight. Lukas is and has been an overcomer. He continues to defy the odds against him and is gradually making improvements in all areas. Lukas didn't start crawling or walking at the normal toddler stage (neither did his sisters) but with weeks and weeks of physical therapy (with the most amazing physical therapist) he began to finally crawl and walk! He is now a proud owner of some awesome Dino SMO orthotics that help give him lots of support! We see now, all the benefits that come with his therapies! They play an important role in his overall health. Lukas also began feeding therapy twice a month, as well as checking in with a nutritionist monthly to make sure he is getting the proper amount of calories and gaining weight. He is also followed by a big team of doctors! Cardiology, heart failure team, hematology, genetics, nutritionists, GI, physical therapy, and feeding therapy. We still make frequent trips far away from home to check in with all of our amazing team of doctors! With our most recent visit, and a new GI doctor, he was evaluated by a team of therapists and specialists, that felt like Lukas would benefit from an intensive feeding therapy program in hopes of weaning him off his feeding tube. He has been on the NG tube for 9 months now and is quickly becoming agitated with it.  We initially thought this appointment would bring up the fact that Lukas may need a different feeding tube (one surgically inserted into the belly) AKA the G tube. Which we were not opposed to it, knowing it would help our Lukey Boy, but our GI thinks we can avoid this surgery! Which would be wonderful! She thinks he's doing so well with everything that we should try this program! That being said, she feels strongly about him entering this 12 week treatment. Intensive feeding therapy is exactly as it sounds. INTENSIVE! It will take Lukas and I (Momma) 2 and a half hours away from our family at home to do this treatment. It's our only way to avoid a surgery!! Lukas being the overcomer that he is, we believe he has just this one last mountain to climb. It will require the main provider of our family (Daddy) to take that time off work, to care for the 4 big sisters Lukas has at home. Though we don't have many options, we do know we are surrrouned by an awesome community and are blessed with the support of amazing friends and family!! Who we all love so very much!! I know we are asking for a lot of help, but we are truly out of options! We appreciate any and all of your help!! It's not an ideal situation, but if we can avoid a surgery, why wouldn't we do it!? 
the treatment is set to begin in just 69 days, and we are quickly running out of time! If you can't donate, we truly undertand, and appreciate all the prayers and shares!!! Please continue to pray for Lukas and our family! It'll be a big change, but will be SO WORTH IT in the end!! Just know with your donation, it gets us closer to our goal, and closer to Lukas being able to feel "normal" again! Please help us share Love for Lukas! 

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