Happy birthday Benji!
In upper New Jersey, Benjamin or "Benji" celebrated his 8th birthday and is Casey Cares' 135th birthday this year!
Casey Cares knows that for a critically ill child, each birthday is a special milestone celebrating life. For the children in our programs, it not only marks another year, but it also demonstrates a great achievement. Casey Cares staff and volunteers work hard to send out each of our kids a special birthday package through our Birthday Blast program - we send over 1,000 a year! This simple act of kindness delivers joy and hope to our kids who are undergoing treatment.
Benji's family discovered their son's diagnosis at, of all places, a mall. Tamara, Benjamin’s mother states, “When Benji was 15 months old we were at the mall and we were talking to an older woman in a store. She asked some questions about Benji and then asked if he had MPS. We told him he did not and she mentioned that he had many of the characteristics of her brother who died of the disease.”
That night, Tamara, “looked up the disease and read many mom blogs and saw many of the symptoms that my son had, people with this disease did as well ...enlarged head, failed hearing test, jaundice as a baby, noisy breathing, delayed milestones such as speech and walking. All of these symptoms alone did not necessarily mean anything but together they could. After a discussion with my pediatrician and a genetic visit we learned that my son had MPS 1 Hurler's syndrome - a rare genetic disease that without any treatment would limit him to a 5-to-7-year life expectancy.”
Classifioed as a lysosomal storage disease, Benji underwent bone marrow transplantation for MPS 1 and has had a unique journey post- transplant.
Tamara states, “Unlike many kids who are off immune suppressants and starting immunizations and such Benji struggles with very bad Graft vs Host disease and auto immune hemolytic anemia. As a result, it took us 5 years to get off immune suppressants and to start to revaccinate him. It was a much longer journey than most of our friends and that made the struggle even harder. We would be happy for friends who would hit new milestones but sad that we still were not there. Despite all of Benji's medical struggles he is the happiest, strongest and most empathetic person I know. In school he brings a smile to all the staff and students whether it is him singing down the halls, showing off casts from his latest surgery or drawing pictures to give away. He has a light within him that shines brightly.”
Having joined Casey Cares in 2021, Benjamin has loved receiving packages from us.
“Due to Benji's immune suppression journey he spent 5 years not being allowed to go to events that kids love to go to like Paw Patrol Live, Disney on Ice, etc. In the last two years he has been able to participate in these events. Given the price tag of these and the fact that we have three young boys trying to get them to these events would be very expensive,” says Tamara.
She continues, “The fact that we are able to take him to these events now due to the generosity of Case Cares donors is amazing. We are able to make memories and expose the boys to things they have not necessarily been exposed to. Occasionally we get special gift boxes in the mail. Benji loves getting mail directed to him. Whether it is a birthday present before his birthday or a pajama party care package, getting meaningful mail is something he and I appreciate.”
Tamara recounts, “About 2 years ago, Benji was in the hospital yet again struggling with a complication due to his Bone Marrow transplant. We had tickets to Paw Patrol Live and I was able to take his brothers. Having that quality time with his brothers, doing something fun and enjoyable was really important. There are many times his brothers feel like Benji gets a lot of special time with mom and dad and has good things come to him to make up for all the negative hospital experiences.”
Thus, Tamara appreciates that Casey Cares allows “the boys be able to get a special time with mom in a way that they might not have was really meaningful and important. It gave me a chance to focus on them when unfortunately, many times Benji's medical needs are the priority. The first time I was able to take the boys to Disney On Ice all together was magical. They loved the music and lights and just being there together. I loved watching their faces and knowing that for so long this was something Benji could not safely be a part of but now he can.”
The mother notes the difficulties of being a parent to a critically ill child.
“One of the initial struggles we faced was trying to get all the specialist appointments we needed scheduled in a timely manner as well as trying to decide where to go for treatment. Obviously, we wanted the best treatment possible for Benji especially since one of the treatment options (and the one we chose to do) was a bone marrow transplant.”
She adds, “When we first got our diagnosis we were struggling with all the emotions one does with new diagnosis…fear, anger, frustration, doubt, sadness, confusion, plus I was only about 4 months postpartum with my second child. There was a whole lot of information thrown at us that we needed to digest without really having the time to digest it. We literally had to make life and death type decisions without having had time to really digest and understand the information thrown at us. My husband and I leaned on each other as well as reached out the National MPS Society in order to get support to help us on our journey.”
Today, Benjamin is getting ready for a great birthday party, even with both of his hands in casts due to a recent carpal tunnel surgery.
“Despite this, he is excited for his police themed family party complete with a rice crispy cake and his friends party a week later after casts are off. This is only the second year it has been safe for him to have a party with friends and he loves being able to celebrate with them!” Tamara concludes.
Want to support more programs and fun activities for critically ill children like Benji? Donate here!