My name is Tom and I live with my wife Kate in Philadelphia. How we came to live here is a story of purpose, fight, life, death, and dedication. Our daughter was born on March 13, 2012, with significant brain damage and unable to move of her own volition due to hypotonia (low muscle tone); there was never an explanation for her condition, nor was there ever a diagnosis. She lived on oxygen and constantly fluctuated between intubations, bi-pap, c-pap, and nasal canulas. She ate through a G-tube in her stomach and was never able to eat orally because of the damage in her brain that hindered her motor skills. She was born in New Jersey and after failed treatments in countless medical facilities we made the selfless decision to have her transferred to the countries best children’s hospital, CHoP. (Childrens Hospital of Philadelphia) Ana’s condition began to improve slowly over the course of stay at CHoP, and it was there that we met with a neurologist who used MRI scans to guide us through the acute damage that could be attributed to some obstruction of blood flow to her brain in the last month of pregnancy. We chose to take her home on hospice under the advice of the medical staff. Her life transitioned after six months at home and she passed away in my arms while Kate sang to her. She was pronounced dead on February 17, 2013. Our introspection in the recent months has become as vast and deeply diverse as the roads carved through the altering landscapes of America. We feel our daughter endowed us with an important purpose, one that we feel must be exercised immediately or it will dissipate from memory like so many inert ideas.
The idea will be to take two months and travel across the country connecting with special needs families who we’ve met during our hardships via social media; people who were complete strangers yet advised us and remained available to us at any hour, people who encouraged us and shared their fight with us so we would not feel alone; these people supported us for the simple reason that we shared a common lifestyle that was solely dedicated to the care of our sick children. Our main objective will be to meet with these families and to salvage any unused medical supplies – that would otherwise end up in the garbage – and along with our own excess medical supplies, deliver them to families in need of the necessary equipment. We have seen countless supplies go to waste as a result of medical supply companies and hospitals refusing to take back equipment because it is deemed “unsanitary” once in the home, even if it’s still sealed in its original sterile packaging.This is common practice in the medical supply sector; these boxes of supplies tend to pile up rapidly during the care of the child, and when that child passes families are left with visibly painful memories of their loved ones suffering – so naturally their first inclination is to be rid of it. Without logistical aid parents are forced to throw valued, recyclable supplies in the garbage.
This idea has evolved into a passion, one that we would never have conceived of if not for our experiences with our daughter Ana Cru; she has enriched our existence and inspired us beyond comprehension – to live at our maximum potential, to help those in need, and to share our strength and determination with people in similar situations. We also plan to record every moment, thought, and interaction with those we meet on the road in the hopes of developing our travels into a memoir that will share the beauty and strife of living with a special needs child, and to show that every families situation has its own defining qualities; but it is the bond of strength and pure love that unites us all. There is no amount you can donate that is too small. Your money will be funding a charitable cause that we hope will change our lives and all those that we connect with – whether it be personally, digitally, or by word of mouth. Your money will not go towards any book related ventures, as that will be our responsibility. We thank you deeply for your consideration to join us in the ride through a life seldom experienced, yet decorated with unexpected beauty and simple inspiration.
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