for the love of my life, my son Blaise



If you ask anyone that knows me they will tell you that I love my son like no other. That I live, breathe & die for him. That I would do anything for him. That there is not anything or anyone more important to me in my life than him & that I delight in being not just a parent but that I'm so proud to get to be his Dad. What most may not know is that he is my personal Jesus, my savior, & that without him I would not be here today. I have had to live a very hard life, filed with abuse amd traumas and after my best friend had passed away I had run away, hiding from the world waiting to die. By some miracle and the only thing given to me from above his mother had become pregnant with him not to long after I lost my best friend. From the day they pulled him out of her & they put him in the incubator and he rolled over and looked up at me I immediately fell in love. He brought me back to life, he mended the wounds of my broken heart and for the first time in a long time I was finally able to feel love again. He saved me and gave me the ultimate reason to live again. I promised him that I would never do the things that had been done to me, that I would be the best father there was that would give him the life and father I alwys wanted for myself. That I would never hurt or abuse him, that I would shower him with unending & unconditional love for all the days of our life. I put all of myself into how I raised him and I look forward and blessed by every minute I get to spend with him. He is my best friend & the best thing I have ever done with my life & am blessed to have been given the best job in the world by getting to be his Dad. He makes me so proud to get to be his father as he is the best & coolest kid I have ever met. He is caring, smart, loving, compassionate for his fellow man in a way that I have never seen from the time he was a toddler to how he is now. He is ridiculously smart, funny, aware of the world around him unlike others at his age, and has a spirit to befriend and help all those that cross his path. He is polite, respectful, honorable, and never needs to be corrected as he just does the right thing automatically without me needing to tell him any different. He is amazing at anything he tries to do & he accomplishes what he wants, with a giant heart and a dream to change the world and the people in it for the better. He is truly a unique child and he is a special child who is meant to do something great. I cherish him and thank God everyday for giving him to me as I would never have made it this far without him in my life. In May of 2013 out of nowhere my son became very sick with excruciating pain and massive loss of blood on a daily basis. I took him to four different doctors and three hospitals only to be told that he was fine and that I was overreacting. They told me he was a normal Child who was probably just straining. But they did not see or comprehend the amount of blood that he was losing and that was not normal. So I did some research and found for him the best pediatric GI doctor in all of New York and made an appointment which took us three months to get. When we met with that doctor within an hour discussing his situation and problems the doctor agreed there is something seriously wrong & need to be tested right away. We did schedule testing right away but due to my son catching a virus from his foster sister they refused to put him under anesthesia until he was better and rescheduled him for testing on September 10th. On September 9th however I was called into my managers office where I worked for a well-known bank and was told that I was being terminated for my absences while being out to take care of my sick child or take him to doctors appointments trying to figure out what was wrong with him. I previously had applied for FMLA (family medical leave) on an intermittent basis to justify my absences but because there was no diagnosis no doctor would sign off on these forms. Unfortunately with the loss of my job also meant the loss of my insurance which I had no idea I would desperately need in the days to come. The following day we went for a colonoscopy and a endoscopy. The doctor had not been in there very long doing the test before he came out to tell me the results that he had found. He began to tell us that my sons colon was so bad that he could not go as far as you would have liked because he was afraid of puncturing the walls which were paper thin around the sick parts. He advised us that he believed my son had Crohn's disease or ulcerative colitis. And to make matters worse there's not many options for treatment that we would have. Right now he is not a candidate for surgery and we had two options. The first option was to do nothing and watch him suffer and probably end up with colon cancer in 10 years or we could try one medication which after beginning had to be tweaked & now his treatment will be roughly $12,000 every time we get it and is a treatment he must get every couple of weeks for the rest of his life. The worst part about it is that 1 of the side affects is that it causes blood cancer in children and when they get it is usually a very serious case. Also with this disease there is no cure and they aren't even sure what the actual cause is. I remember as he spoke and showed me the pictures having an out of body experience and his voice drifted away as I slowly came apart at the seams and I could not get back into my body and out of the hospital fast enough before the tears begin to stream down my face. Amazing as my son is and no kid deserving to be sick even more so my son does not deserve this. I would do anything to take it from him and put it on myself. And then came the daunting task of having to explain to my son what was wrong with him and watch him come to pieces as I had to tell him and explain to him what chronic illness he had and how his life was going to change even more then it already had. As the months have gone by I watched get sicker and sicker and although they put him on steroids in the interim it has not helped him and only caused him to put on massive amount of weight which only made him into an emotional state but also feeling bad about how he looks and the fact that he is different from other kids his age. Even his everyday life with simple things like school had changed because of this disease and what it has done to his colon affecting how many times he would have to leave class to run to the bathroom and sometimes not make it. Aside from the little bastards he was in school that began to pick on him because of the weight he had gained. With each day my heart breaks for him. with each day I'm watching him pray to God asking for a miracle and to be healed and then have him asking me why if he is so faithful to God why is God not healing him and for that I have no answers. And all I can say is to hold on and keep believing when inside myself I'm having trouble believing. When I have trouble holding back the tears, when I have trouble trying to be strong for him, trying to keep on a brave face while the world, that is my son is crashing down around me. And he, this perfect child doesn't deserve any of this, when he deserves so much more then I can ever hope to be able to give him. So we have our options from the doctor which aren't many and what makes it more difficult is the fact that losing my job means losing my insurance when I needed it most. Sure I have the option getting insurance from Cobra but the payment for a family is $1500 a month on top of rent, food, utilities and all of our regular monthly bills. Which I could not afford with no job so we lost that option. Aside from the fact that his mother and I were very leery about giving him that medication because of the cancer that runs rampant on both sides of our family. Then right after Thanksgiving my son started having a flare up which made his symptoms much more worse then they were before to the point where he could not go to school anymore because he was in the bathroom every hour losing ridiculous amounts of blood during bowel movements, aside from the horrible cramping and stomach pain he was going through. Which even kept him up at night and would not allow him to even have a good night sleep and while he did not sleep I did not sleep as I sat with him everytime he had to run back to that bathroom. In the meantime we have applied for Medicaid but they will not cover all of the expense of this expensive medications. A few weeks ago we went in to see his doctor and after running some blood test on top of being anemic we found his hemoglobin had dropped dangerously low so we needed to rush him to the ICU where they gave him some blood transfusions while we tried to get him stable. After we were able to get him stabilized they gave him that first round of treatment. And for the first time in months I finally got to see him smile and laugh and make jokes again. We were in the hospital for a few more days while they watched him but the medication had stopped the bleeding, stopped the pain, and for once in a very long time he was finally able to sleep through the night. Now he must continue to take this medication every couple of weeks while we monitor him to make sure that he does not contract lymphoma or any other serious blood cancer. But where we will get the money to make up the difference for the care he needs I do not know. If anyone knows me they know I am very proud man and I take great pride in taking care of those around me, taking care of those I love, without ever asking for help from anyone; as I have not done so since I was 14 years old and began at that point to take care of myself. And since that time while taking care of myself I've done my best to help all those around me to the best of my ability. I would never ask for anything for myself as I have always put everyone else first and myself last because that is just my way. But when it comes to my child there's nothing I will not do to help him or get him the help he needs. We are at very critical point where we need any help we can get so that we can continue to get him the proper treatment so that he can go back to living as normal a life as he possibly could. So that he can try to live as carefree as any other 9 year old child deserves . And this 9 year old child deserves so much more, because since he was four years old he has had his life planned out and every part of that plan involves helping everyone in the world that he comes across. As well as making a difference and changing the world for the better in which he lives. I'm asking you for any help that you can spare or anything at all that you can do to help me get this child all the help he needs and then some, because he deserves its so much. Anyone who has ever met him will tell you the same, because he like his father, has a giant heart and is very special child and very unique and is going to make a difference in this world when he gets there. Not only would I greatly appreciate it but it will mean everything to a child who is so grateful for even the smallest of things he is given; so that any gift that you could contribute to helping us keep him treated & healthy & in remission would mean the world to him. Not to mention it would mean giving him his life, dreams & aspirations back as well as helping him forget so much of the nightmare he has had to live through already. Thank you for reading our story & for anything you do to help change his quality of life for the better. I could never thank you enough, but just know the smile and life you put back into his heart is priceless & will never be forgotten.

Donations

  • Alisha Regan 
    • $50 
    • 55 mos
  • Sarah Zilversmit 
    • $10 
    • 57 mos
  • Sarah Zilversmit 
    • $10 
    • 58 mos
  • Jennifer Bernhard 
    • $150 
    • 59 mos
  • Natalia Galynker 
    • $50 
    • 59 mos
See all

Organizer

Micah Warren 
Organizer
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