65 Roses of Hope for Jake

My brother and I share such a strong bond, all of my favorite memories and so much love. He is honestly my favorite person in this entire world, he is the most giving, funny, and kind person I have ever known. Anyone who knows him will tell you the same, he makes everyone feel welcome and important. The thing I wish my brother and I didn’t share is the chronic illness Cystic Fibrosis. When we were diagnosed, little was known about it, my mom was told we would be lucky to live until we were six years old, and here we are. A lot of people have never heard of Cystic Fibrosis even still. Cystic Fibrosis is an inherited chronic illness, my mother and father were carriers of the gene, they had no idea. It causes severe damage to the lungs and digestive system and can spread harm to other organs in the body and can easily lead to Cystic Fibrosis related diabetes. I am lucky enough to not have experience severe damage to my other organs or develop diabetes on top of everything else, but my brother has. The disease is progressive and it has taken no mercy on my brother’s body, spirit, and mind. He is being hospitalized at Children’s Hospital Boston for the fifth time this year, he will be spending Christmas there for the second year in a row. Cystic Fibrosis patients are quarenteened to their rooms for atleast 14 days and most often longer. Putting your entire life on hold for two weeks or longer stuck in a room leaves you feeling guilty, frustrated, angry and heartbroken, I know first hand. I live in Boston and my brother lives in New Hampshire, I am finishing school and working full time and I want to quit it all to take care of him so badly, but he would never allow it, not from my mom or my dad either. He refuses to let us put our lives on hold for him. Everytime he gets out of the hospital he feels extremely guilty for being out of work that he pushes himself too hard and too fast. I know he realizes this but that is who he is as a person, he doesn’t want to be a burden and he loves helping others. My brother is too weak mentally to physically get better. Everytime I see him he is struggling and he is pain and he still is cracking jokes and asking me about my life. He would always rather help others than himself because with himself, he doesn’t know where to start, everything is extremely overwhelming. But I can see he so is tired, he has lost hope and I need to ask for help for him. He has no idea I am doing this and he didn’t ask for anything, I just know I have to do this for him. He picked up every single one of my phone calls when I felt helpless and empty after our parents got a divorce 6 years ago. When we had our feeding tubes placed when I was 12 and he was 14, he held my hand and told me how much he loved me and how brave I was and that was the last thing I remembered before being wheeled off to surgery. When I woke up he was in the room in the bed next to mine and I remember thinking, “we made it.” He has taught me that making connections with others is the best thing we can do this in world. He is a friend to everyone he meets. He is a person that this world desperately needs more of. My goal is to raise enough money to support my brother fully for six months, cover all his bills and necessities and get him a personal trainer to implement him on an exercise program that will increase his lung function and overall health. Regular exercise is a known key factor with staying healthy with this illness. During these six months it is my hope that he will regain his mental and physical strength and form strict medical adherence that he never strays from because he feels so good that he doesn’t ever want to give it up. I need to give him this opportunity, I need to know that he was given this chance. I believe that knowing all these people came together just for him with everything else going on in the world and everyone having their own struggles would truly heal his heart. Anything and everything helps, even kind words, he would love that the most. From the bottom of my heart, thank you.