Miracle Babies for Baby Walter

When our son Walter was born, we didn't know if he would survive his first week.  When he began to thrive, we still weren't sure if he would ever be able to control his body or even recognize us.  As time has passed, Walter has surpassed every expectation that we had on the day of his birth.  He faces many challenges on a daily basis, but he is happy and social and his physical development is improving every day.  He can sit and play with toys, he has started to get on hands and knees, and though he is nearly 100% tube fed, he is able to feed himself small amounts of food.  He is truly a #miraclebaby!

Walter was born on October 5th, 2013 and spent the first 10 months of his life in the hospital.  He suffers from a rare condition called Long Gap Esophageal Atresia Type A, which essentially means that he was born without an esophagus. For Walter, this was caused by a very rare mutation of the SOX2 gene that has also caused several other birth defects including a cloudy, smaller than normal right eye and underdeveloped optic nerve, the absence of one of the connections between the two hemispheres of his brain, hormonal issues, hypotonia, and moderate developmental delays.  He was born unable to breath on his own and unable to move.  He has since improved by leaps and bounds, thanks to amazing medical care and skilled PT, OT, and ST therapists.

Long gap Esophageal Atresia is very rare and difficult to treat.  After getting a bleak prognosis from his local surgeon, we took a leap of faith and had him transferred from across the country to Boston Children's Hospital thanks to the generous support of our friends, family and online supporters.  At Boston Children's Hospital, they have a surgical team that is dedicated to treating EA.  Once there, we experienced a lot of ups downs....amazing successes and moments of sheer panic.  Walter faced many more trips to the operating room than we ever expected due to his unusual anatomy.  Finally, after 6 months away from home, the surgeons found a temporary solution that would allow him to live safely at home.

On June 12, 2015, Walter will have the next (and hopefully last) major surgery to reconstruct his esophagus at Boston Children's Hospital.  We are expecting Walter to be in the hospital 6-8 weeks.  We live in Memphis, TN so Boston Children's is hundreds of miles away from our home.  In addition to medical expenses, we will also face additional housing expenses, food, and travel so that Daddy can come visit a couple of times during our stay.  The Ronald McDonald House that serves Boston Children's is reserved for oncology patient families only, so we will be staying in another Patient Family Housing option at a cost of $30 per day, which works out to about $900 per month.  Yes, this is the least expensive option for long term stays.  Factor in food, toiletries, daily travel (bus and cab rides), airfare for our family and the cost of the treatment and we are looking at a very expensive trip.  We will do whatever we have to for Walter and your help will make a world of difference.  I am excited to offer t-shirt and onesie options that will allow other families to celebrate their miracle babies while helping us improve the life of ours.  Thank you in advance for your support.