Whatever it takes: Fighting for Michael

<img class="alignnone size-full wp-image-33794" src="https://mdthinks.com/wp-content/uploads/2017/12/whatever-it-takes-fighting-for-michael.jpg" alt=" Michael does not let the short bowel syndrome prevent him from doing sports "width =" 800 "height =" 536 "/>

Michael stood at the top of the hill, staring at the glistening white snow. The prospect of skiing to the bottom was frightening – in previous trips he had refused to try, fearing that he would fall. But this time was different. He was ready to take a chance. Trying to balance without using sticks, he advanced and slipped through the powder while his family encouraged him. At the end of the day, the eight-year-old descended the slopes five times, all alone.

The achievement was even more significant for his parents, Bill and Lisa Smith, who saw him struggling to survive – and thrive – since his childhood. "He had some problems with spitting and becoming blue and was diagnosed with acid reflux when he was about a month old," says Bill. "But we had suspicions that something else was wrong."

<img class="alignnone size-full wp-image-33795" src="https://mdthinks.com/wp-content/uploads/2017/12/1512735870_818_whatever-it-takes-fighting-for-michael.jpg" alt=" Michael and his older brother "width =" 800 "height =" 534 "/>

Definition of an example

Indeed, three days later, Michael experienced volvulus a deadly disease in which the intestines twist, cutting off the supply of blood to the intestines hail. As a result, surgeons had to remove about 90 percent of his small intestine, leaving him with a serious condition called short bowel syndrome that prevents the body from extracting the nutrients it needs. to survive. The doctors determined that Michael had also been hit several times. His doctors referred the family to Advanced Intestinal Rehabilitation Center (CAIR) at the Boston Children's Hospital.

There, Michael underwent a series of procedures with Dr. Tom Jaksic who reconnected his intestine and inserted a central line, a GJ-tube and ultimately a G tube to provide nutritional support. The Smiths spent as much time as possible with their little boy during the six months that he spent at the hospital, while Lisa and her parents continued to take care of their eldest son, Matthew, and that Bill was going and came to work. "It was hard," he admits. "But we wanted to give the example to our two boys that you do not give up and continue, and Michael took this example to a whole new level."

<img class="alignnone size-full wp-image-33796" src="https://mdthinks.com/wp-content/uploads/2017/12/1512735870_490_whatever-it-takes-fighting-for-michael.jpg" alt=" Michael and his family "width =" 800 "height =" 534 "/>

Be proactive

Their stay at the hospital was facilitated by the staff of Hale Center for Families who supported them during their stay. Still, bringing Michael home was also a challenge. "We had to face the hard realization that his life would not be what we had originally planned for him," says Bill. "But we tried to keep the view that Michael's worst day could be the best day of another child, which prevented us from ruminating what could or should have been for him."

Inspired by the fighting spirit of their son, the couple decided to learn everything they could about his condition and how to deal with it. "We try to be proactive in keeping him hydrated and treating minor problems at home so that he does not have to be hospitalized," Bill says. "The CAIR team listens to our ideas and trusts us as partners in our fight to help Michael live as long and happy as possible."

As most parents of children with medical conditions know, a good deal of this battle involves dealing with insurance companies. While he still relies on his G-tube to provide him with nutrients, Michael has learned that he likes to eat. His parents credit his participation in a feeding and swallowing program by overcoming the oral aversion s and expanding his palate. "We fought for insurance to cover this program," recalls Bill. "But it was worth it."

<img class="alignnone size-full wp-image-33797" src="https://mdthinks.com/wp-content/uploads/2017/12/1512735871_114_whatever-it-takes-fighting-for-michael.jpg" alt=" Michael on the Island of Liberty "width =" 800 "height =" 534 "/>

Never give up

Today, Michael is an avid athlete who enjoys watching sports and playing basketball and soccer. Although the damage related to stroke left him with serious memory problems, he likes to look at books and learns to read – and has not missed a single day of school l & # 39; last year. "He's never totally healthy, but he's a wonderful kid," his father explains. "He wants to do what he sees his brother and the other kids, and he does not feel frustrated when he has to do it differently."

Bill and Lisa say that, as stressful as it may be, they are grateful for Michael's progress. "I do not want to say that it's a miracle, because it reduces the efforts of all the medical experts, his mother and Michael himself," Bill says. "He's 10 times harder than ever, his motto is" all he needs "He never gives up – and we do not either."

Find out about the Advanced Intestinal Rehabilitation Center .

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