Liam Bolans Fight
Donation protected
Liam's story:
On April 29, 2015, my 5 year old nephew was diagnosed with very early onset inflammatory bowel disease. He was carried into Goreyb children's hospital so pale he was grey, dangerously rapid heart rate, and with elevated blood pressure. He was critically ill after 12 days of bleeding from his intestines. He was rushed into an exploratory endoscopy and colonoscopy and emerged incoherent for almost 2 hours. He was diagnosed with an aggressive and extensive form of ulcerative colitis. Extremely rare for a child his age. Our family was at the beginning of the most difficult challenge they would face, to date. He was so anemic, he developed a heart murmur from the strain on his cardiovascular system and was admitted to receive IV steroids and a blood transfusion. He did fairly well until one otherwise normal day in December 2015, he began to bleed again. This time, they intervened immediately, but the bleeding persisted even after he was admitted. Blood levels were once again dangerously low, and he was administered a very risky iron infusion. Eventually, the bleeding stopped. They stayed in Goreyb for 5 days. He was discharged and they were urged to see a team of specialists at Children's Hospital in Philadelphia. Less than a week later, he re-bled and with blood levels beginning to drop once again, they made the agonizing decision to begin our 5 year old nephew on IV remicade treatment. Liam responded for only a little over 6 weeks, and the symptoms resurfaced. Two more remicade treatments were administered over the course of 6 weeks, and despite doctors efforts, he continued to decline. He was diagnosed with an intestinal infection on April 9th. This was a devastating blow to his already compromised state, and rendered all recent infusions useless. He was once again admitted for another 6 grueling days. He was the most defeated, and ill we had ever seen. It is heartbreaking and agonizing to watch a child suffer so. He underwent another series of procedures and painful infusions. They are home now, on 9 medications a day, given at 14 different times throughout the day, and the addition of a chemotherapy based drug is going to be added. This medication may make him violently nauseous with vomiting, and may cause him to loose his hair. He is obviously unable to attend school, he has missed nearly 30 days of kindergarten this year. As they just crossed their year anniversary since Liam's diagnosis, sadly they are worse off now, then they were one year ago. The mainstay medications have failed him, and our hopes for recovery get slimmer with each passing day. This viscous and debilitating disease has robbed our nephew of the opportunity to just be a child. A child that can run free with his friends and not suffer the agonizing joint pain that results, a child that can attend school, laugh and make friendships, a child that does not fear eating because it will make him run to the bathroom, a child that is free to urinate in school without worry that people will ask about the funny color from his medications, a child that can look in the mirror and smile because he doesn't have to look at the bloated face and belly from the steroids, a child that doesn't have to ask before they leave the house if there will be a bathroom where they are going. While they still struggle to come to terms with the gravity of this devastating chronic illness, they are being suffocated by the medical costs. These costs continue to mount, as they continue to lose work in order to care for their son. While they struggle to make these extremely difficult decisions about his care, and mourn the loss of normalcy, there is still a six year old who still has dreams of his own.
Thank You for your support, this means more to us then you can imagine!
On April 29, 2015, my 5 year old nephew was diagnosed with very early onset inflammatory bowel disease. He was carried into Goreyb children's hospital so pale he was grey, dangerously rapid heart rate, and with elevated blood pressure. He was critically ill after 12 days of bleeding from his intestines. He was rushed into an exploratory endoscopy and colonoscopy and emerged incoherent for almost 2 hours. He was diagnosed with an aggressive and extensive form of ulcerative colitis. Extremely rare for a child his age. Our family was at the beginning of the most difficult challenge they would face, to date. He was so anemic, he developed a heart murmur from the strain on his cardiovascular system and was admitted to receive IV steroids and a blood transfusion. He did fairly well until one otherwise normal day in December 2015, he began to bleed again. This time, they intervened immediately, but the bleeding persisted even after he was admitted. Blood levels were once again dangerously low, and he was administered a very risky iron infusion. Eventually, the bleeding stopped. They stayed in Goreyb for 5 days. He was discharged and they were urged to see a team of specialists at Children's Hospital in Philadelphia. Less than a week later, he re-bled and with blood levels beginning to drop once again, they made the agonizing decision to begin our 5 year old nephew on IV remicade treatment. Liam responded for only a little over 6 weeks, and the symptoms resurfaced. Two more remicade treatments were administered over the course of 6 weeks, and despite doctors efforts, he continued to decline. He was diagnosed with an intestinal infection on April 9th. This was a devastating blow to his already compromised state, and rendered all recent infusions useless. He was once again admitted for another 6 grueling days. He was the most defeated, and ill we had ever seen. It is heartbreaking and agonizing to watch a child suffer so. He underwent another series of procedures and painful infusions. They are home now, on 9 medications a day, given at 14 different times throughout the day, and the addition of a chemotherapy based drug is going to be added. This medication may make him violently nauseous with vomiting, and may cause him to loose his hair. He is obviously unable to attend school, he has missed nearly 30 days of kindergarten this year. As they just crossed their year anniversary since Liam's diagnosis, sadly they are worse off now, then they were one year ago. The mainstay medications have failed him, and our hopes for recovery get slimmer with each passing day. This viscous and debilitating disease has robbed our nephew of the opportunity to just be a child. A child that can run free with his friends and not suffer the agonizing joint pain that results, a child that can attend school, laugh and make friendships, a child that does not fear eating because it will make him run to the bathroom, a child that is free to urinate in school without worry that people will ask about the funny color from his medications, a child that can look in the mirror and smile because he doesn't have to look at the bloated face and belly from the steroids, a child that doesn't have to ask before they leave the house if there will be a bathroom where they are going. While they still struggle to come to terms with the gravity of this devastating chronic illness, they are being suffocated by the medical costs. These costs continue to mount, as they continue to lose work in order to care for their son. While they struggle to make these extremely difficult decisions about his care, and mourn the loss of normalcy, there is still a six year old who still has dreams of his own.
Thank You for your support, this means more to us then you can imagine!
Organizer and beneficiary
Justin Genese
Organizer
Wayne, NJ
Ryan Bolan
Beneficiary
