The Force of Lucas

Our son Lucas was born with Williams Syndrome and Ocular Albinism.  They are two completely separate genetic conditions, both unexpected, and come with their own set of challenges. 

He is legally blind, and must overcome developmental delays, as well as medical concerns with his heart, brain, liver, and stomach.  However, the Force is strong in this one -- and Lucas is light years ahead of where he was a year ago. 

Physical therapy, occupational therapy, vision therapy, and feeding therapy are part of our daily life.. as are neverending doctor appointments.  One of our biggest challenges in his treatment is making sure we are doing everything we can to help him.  There are not many cases of Williams Syndrome in north Texas, and geneticists who specialize in it are all out of state. 

This is why attending a Williams Syndrome Convention is so important to our family.  Early intervention is critical to Lucas' success, and we want to be armed with every tool available to fight for him.  This conference covers everything from medical concerns to watch out for (and there are many), to the latest research and study results, plus financial planning and trusts.  

Our immediate wish list is just enough money to cover travel expenses for the conference ($5500), but we are asking for more to help with medical bills.  Even with health insurance, we have to pay $4800 a year out of pocket.  We are still trying to catch up on last year's bills, and have a stack of medical bills for this year, too (we're looking at $9600 for 2013/2014).  Some of Lucas' genetic testing (which qualified us for therapy services) WAS NOT COVERED by insurance.. so that's a totally separate expense ($6500) we're working on. 

We are also anticipating another $3300 bill by the end of the year for Occupational and Feeding therapies.  Insurance only covers 60 sessions, and we'll max out in August -- meaning we'll owe the rest in full.  Lucas also has several tumors on his liver, and we are anticipating more expenses with his oncologist later this year.  

No doubt, Lucas has a long way to go with his development, but the progress he has made since starting therapy is remarkable.  Just in the last few weeks, he has started holding onto things longer... he's standing... he's talking more (okay, babbling)... and he responds more to the world around him. 

His smile can melt any heart.. and when he accomplishes a new challenge, the pride in his eyes will have you celebrating along with him (he loves applause, and hearing "yea, Lucas").  Please help us discover the next way to help him grow, by sending us to the Williams Syndrome Convention.    


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Amanda Carson McNew 
Plano, TX
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