Declan's Lucky Charms
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Declan looks like your typical seven-year-old climbing rock walls, skiing, and riding roller coasters. But look underneath his clothing and you will find a very complicated story. Declan has microvillus inclusion disease, which is an inherited genetic disease which basically causes the small intestine not to absorb food, therefore making him "failure to thrive". In individuals with MID, lifelong nutritional support is needed and given through intravenous feedings ( parental nutrition). Even with nutritional supplementation, most children with MID, do not survive beyond the age of 2.
But with the amazing doctors, nurses, and scientists at Boston Children's Hospital, they have been able to help Declan live in incredible life. They have been able to maintain his nutrition to grow and thrive due to their experience, discovery of new treatments, finding new cures, and giving every family the care and attention they deserve. Declan has an incredible team that works with us every day to keep him alive, growing, and healthy!
The one thing for us, that makes this hospital very special, is their work on discovering new treatments. Since the age of 8 months, Declan has been participating in a formal clinical trial for Omegevan. Omegevan is a fish oil emulsion administered intravenously in patients who require parenteral nutrition supplementation. Studies at BCH show that Omegevan is aimed at preventing liver disease in PN recipients. This work has caused a worldwide shift in treatment. More than 100 children at Boston Children’s Hospital have received Omegaven, and over 90 percent of them are still alive. Declan is living proof of that!
Declan is also seen by many other departments at BCH, including HPN program, General Surgery, Behavioral Medicine, Dental and the Epilepsy Center. Declan was also diagnosed at the age of 4 on the autism spectrum and our team at Boston was quick to guide us thru the process of diagnosis and treatment.
Thank you for taking the time to read our family's story and thank you for your kind sponsorship!