It took two and a half years to collect the signatures, but Collin never stopped believing. He was so happy the day he found out the campaign had been a success because he knew he had helped many “kids like me”. That’s Collin – always looking to help others.
Collin was originally diagnosed at birth with a rare genetic disease called Blau Syndrome. Although there is no cure for this auto inflammatory disease, he has been treated with many different drugs that helped to control the flare ups and manage the near-constant pain. His immune system can’t tell the difference between good and bad cells, so it attacks everything.
In December of last year, Collin’s body began to react differently to the treatments, and his lungs and liver began to deteriorate. Tests were run, and Boston Children’s Hospital ruled out the original diagnosis of Blau Syndrome. As I write this, he remains undiagnosed. Due to his medical condition, he has had numerous other underlying health issues that are now gravely impacting his quality of life and will ultimately cause his body to give up.
Collin has spent most of his ten years of life in and out of hospital. He considers The Barbara Bush Children’s Hospital his “home away from home”. In the past year alone he has spent the last ten months in the hospital with only a few scattered days when we were able to bring him home.
Over the past ten years our family has struggled financially due to the need to get Collin back and forth to the different hospitals, and to be with him during the long periods of hospitalizations. Most recently I have had to resign from my job to be more present for Collin and his two sisters, Shawnna and Brooklyn. Derek, Collin’s dad, is a fisherman. In recent months, he has not been able to work regularly as he won’t risk being away at sea in case Collin’s condition worsens.
We recently met with Collin’s care team at BBCH. They have determined at this time Collin is not going to get better and he has been transferred into hospice care. He will have to remain in the hospital as his needs far surpass anything that we can provide at home.
I want to make the remaining time we have with Collin the best it can be. I don’t want to continue to be distracted by financial worries so I am putting aside my pride and, for the first time, respectfully seeking donations to help provide for Collin and his sisters’. The money will be used to help support my kids through this time, and to cover end of life expenses. Any amount you can contribute will be greatly appreciated. Thank you for your time and consideration.
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