A show of support…

This is Devin.  Devin is 8 years old.  He loves baseball…and especially the Yankees.  He loves to go swimming and invite all his friends in the neighborhood over to his pool in the summer.  He eats with gusto.  He actually likes going to school.  If you were to meet Devin, you’d think he was just a normal little kid. 

But Devin is not a normal kid.  He’s actually really sick.  He was born with a condition called Short Gut Syndrome… a condition that caused him to have difficulty digesting and left him unable to eat by mouth.  He was also a ward of the state and he spent his first year in the hospital.  J’s cousin Colleen met Devin while she was working in the hospital and she fell in love with him.  She and her husband fought hard and were finally able to adopt him.  His life has been a struggle…filled with medications and surgeries and therapies.  But he is lucky enough to have found a family who adores him. 

Since the beginning, Devin’s parents did everything they could to keep him healthy.  They found the best doctors around and they tried every medication, therapy, surgery and suggestion the doctors had.  They did whatever they had to.  Eventually, their only option became a bowel transplant.  It was a last resort and it was necessary to save Devin’s life.  He was placed on the transplant list and they waited. 

There were a couple of false alarms…but then finally they got the call.  Devin received his transplant about two and a half years ago.  The photo above was taken at his two-year anniversary celebration dinner. 

Here’s something I’ll bet you didn’t know…a transplant is not a cure.  A transplant will not make you well or solve all your problems.  A transplant will simply extend your life some and it comes with a whole host of other problems.  Devin has made remarkable strides since his transplant…he’s been able to eat, to go to school, to stop living with a feeding tube and a ton of medications.  But he’s also had a few routine illnesses land him in the intensive care unit, fighting for his life.  He’s struggled with tons of side effects from his anti-rejection medications. 

Ever since his transplant, Devin and his parents have been in a constant battle to find balance.  Balance between giving Devin a normal life and keeping him healthy.  Balance between his medications in order to control his side effects.  Balance in school between keeping him interested and focused while still meeting his medical needs.  Colleen often feels like she’s walking a tightrope and she’s always struggling to figure out the right answers…to give her son the best quality of life, while still keeping him healthy.

Well, now Devin is fighting again.  Last week…just as his mom finally began to feel that she had achieved the balance that has been just out of reach for so long…she got some bad news about Devin’s liver.  The doctors started throwing out terms like “irreversible liver failure”.  It was a huge blow.  Devin seems so healthy and happy…finally…and now this. 

They are trying some different things…new medications, new combinations of old medications…to see if they can reverse this process.  But Colleen is adamant…for her it’s quality of life over quantity.  She feels that Devin has suffered enough in his life and she wants him to be happy and enjoy his life from here on out.  She will not change his medications to prolong his life if it means he’s going to suffer and be miserable.  She’s once again struggling to find balance…and as usual, there are no easy answers here. 

I think Colleen and her husband Derrick are amazing for what they’ve done for Devin.  Not everyone would have taken on the challenges that they have and not everyone would have worked so tirelessly in giving Devin a wonderful life.  None of it has been easy and I don’t know how Colleen makes it through the day sometimes.  Right now, they are making the hardest decisions about Devin’s care that they have had to face yet and they are going to need all the support they can get. 

So if you have a minute…please stop by Colleen’s blog and find out the latest update on Devin…and leave Colleen and her family some words of support.  I know she’ll appreciate it. 

And also…consider becoming an organ donor.  Organ donation might not be a cure, but without his transplant, Devin wouldn’t be here today and he wouldn’t have had the last two years.  There are so many people waiting for transplants…give them the gift of life by becoming a donor and making sure that your family is aware of your wishes.

Devin with his brother Raymond and sister Caitlin

 

Colleen and Derrick, aka Mom and Dad

Comments

  1. What a sad story :( I can’t imagine what that must be like on this family but my thoughts and prayers are with them all. Stopping over there now.

Speak Your Mind

*