More than 15 years ago I was fortunate enough to walk through the doors of Boston Children’s Hospital and work alongside some of the most inspiring caregivers healthcare has to offer. To this day I reflect on my experiences working in the cardiac electrophysiology lab and volunteering with the Pacemaker Camp and I am excited to share that I've joined the Miles for Miracles team to help support the brave kids at Boston Children's Hospital!
I am also proud to introduce my patient partner, Jacob. Jacob and his twin sister Mayra were born at Children's Hospital at Dartmouth at 26 weeks. Both Jacob and his sister were ventilated at birth and moved to the ICN but each child had a different course of treatments, diagnoses and surgeries in the following weeks and months.
Jacob spent a total of 5 months receiving medical care at CHaD with consultations with BCH Pulmonary team. At one month old, he underwent heart surgery for Patent ductus arterioles (PDA). This required numerous hypertension therapies and surgery to place in a tracheostomy tube to help with ventilation. At 5 months, he was transferred to BCH where he had a Lung Reduction life-saving surgery. After surgery he spent an additional 5 months in Boston to improve his breathing. The hospital monitored his Pulmonary Hypertension, for which he was diagnosed with RVH (right ventricular hypertrophy) and RA (Right Atrial) enlargement. Jacob also began weaning off heavy narcotics for which he was under paralytic and sedation for over 3-4 months until he had the lifesaving surgery. After another 5 months of recovery, at 18 months old, Jacob was finally able to come home.
After 4 years of intense treatment and therapy, in 2013 Jacob had a tracheostomy removed and began living life without it and eating solid foods. Two years after the removal and thriving with eating, Jacob had his G.I. tube removed and was officially tube free.
Although Jacob is still followed by numerous specialists and continues to need therapies for communication, he lives a normal life. He has undergone so many major surgeries and has surpassed many negative predictions of his future. He loves to run around, which for a little boy who is missing a huge portion of his right lung and severe pulmonary hypertension, you would never be able to tell. Jacob loves being outdoors. He enjoys swimming, skiing, kayaking, riding his bike, going for walks- especially to the park and loves music.
I hope you are as inspired by Jacob's story as I am.
Every dollar raised funds the very best medical care, breakthrough research and vital support services for sick kids and their families. Your gift will:
- help children from your town and across the world get a second chance at life;
- give kids battling the most complex diseases care they can't find anywhere else;
- fuel 3,000+ researchers working to develop new treatments and cures;
- support patient programs, like music and art therapy, to let kids be kids, even during long hospital stays;
- help patient families in crisis with urgent needs, such as food, clothing and housing;
- deliver the most compassionate, leading-edge care to every child who needs it.
Please support my fundraising and help the incredible kids and families at Boston Children's Hospital.