My name is Renee Farrell. I have three children, two of which have been diagnosed with an unknown type of Children's Interstitial Lung Disease (chILD).
What does this mean for my kids? Quite honestly, we have no idea. We don't know what the future holds. Testing seems to leave to more mysteries and unknowns then answers.
When you are told that you have a child with a rare, chronic disease, it turns your entire world upside down. In that instant you know that your lives will never be the same. Many have financial hardships, having to travel to get the care their child needs. The unknowing of what to do next, the loneliness of this new journey that you are now on.
Together with a handful of parents and a group of doctors and medical professionals at Boston Childrens's Hospital, we are working to make this road a little easier to bear.
We raise money to help support families with medical equipment, copays, travel expenses, etc. We try to educate and raise awareness. We host camps for the kids and their families, so they can meet other families just like them. At these camps, doctors and medical professionals come and give presentations to the parents to help us keep up to date on how we can help our children.
We raise awareness for chILD, as there is no cure and no federal funding to help find a cure. Ultimately we hope to help support research opportunities.
We are chILD parents, and we are determined and dedicated to helping kids with Children's Interstitial Lung Disease.
For the parents whose children are no longer here because of this disease, we will do better. You are not alone. We will not give up.
Thank you all for your support. We are beyond blessed.