2 brothers with cystic fibrosis in need

Through the suggestion of some really  awesome military personnel that are aware of our family's situation, I am writing the story of my oldest daughter's family in hopes that the kindness of others will reach out and help.
 
Two of my grandsons, Xavier and Declan Blouin, ages 4 and a half and one and a half years old respectively, were diagnosed with Cystic Fibrosis on July 4, 2013.  Cystic Fibrosis (CF) is a life-threatening disease which affects the respiratory, digestive and reproductive systems of the body.  The normal life expectancy is between 35-40 years of age, barring medical complications.  This disease is with the boys for life; there is no cure. 

Having CF means that the boys must have daily percussion treatments at least two times per day. If they are ill then the treatments are performed four times per day.  They have a daily nebulizer treatment in order to attempt to break down the mucous in their systems. Living with CF means that the amount of exposure that they receive to unhealthy environments must be greatly reduced which is necessary to keep the boys from becoming ill.  Every illness that they endure, every germ that invades their body, leaves scar tissue which in turn reduces lung performance.  It is critical that they stay as healthy as possible.

Having CF also means that food needs to be of the best quality that the family can afford-it acts as ongoing medicene for Xavier & Declan.  However, in addition to CF, Xavier also has Celiac disease, peanut and tree nut allergies, which means that because he cannot have gluten in his diet, his food is very expensive. 


My daughter Heather is the mother of these two boys, as well as an older son Quentin, 8 years old.  She is the primary caregiver for all of their needs.  My son-in-law Jason Blouin is a recruiter in the Army National Guard.  In order to help make ends meet he also works as head coach for the Moses Brown varsity basketball team.  Although  Jason's schedule is full, he helps with the boys whenever possible.   Recently it was discovered that Heather has osteoarthritis in her knees, hands and fingers.  It was only discovered because of the pain and swelling that had been occurring on a regular basis.  Unfortunately her condition at the age of only 33 does not agree with the type of care that she needs to give to three young children.

The Blouin's live in an older, small, two story house that is in need of repairs in order to have a quality environment for the boys.  Their bathroom was recently renovated because of mold.  Although they received some financial assistance for that project, they are still paying for the repairs.  The upstairs bathroom is not vented and is beginning to become another mold issue, as well as window frames that are in need of replacing because of the same issue with mold.  They would like to have an air filtration system installed in the home and to replace all carpeted areas with wood flooring in order to reduce allergens in the air.  Soffets outside of the home are being visited every year by carpenter bees which are very destructive.  Their basement is a stone foundation and is not dry; again there is the threat of mold in the home.   These and the discovery of other repairs are basically impossible to stay ahead of or to repair because of the increased out-of-pocket expenses that go with CF - the substantial increase in groceries, the increase in their electric bill because of medical equipment that is run on a daily basis, the costs of hospital visits for check-ups that require parking fees; the out of pocket expense for copays on prescriptions; the daily nutritional drinks that are required to maintain a healthy body weight (Xavier is under weight because of celiac disease).

Ultimately their goal is to be able to move into a single story, mold and repair free home. We don't know what the future will bring for these two precious little boys; but one thing for certain is that we want them here with us for as long as possible and as healthy as possible.  On behalf of me and every member of our family, thank you for your support.

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Sabrina Marshall 
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