I have been thinking about what to say for a while now and seeing what a turnout today has been, I am at a loss of words again. 12 years ago, Matthew was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. He was born with half a heart; 1 ventricle and 1 atrium. His aorta was the size of a pen point. At just 5 days old he underwent his first open heart surgery for his 3 stage repair. He then had another open heart at 3 months old and then 2.5 years old. He has always been a smiling bundle of joy with a heart bigger than anything, even though it may only be half the size. In the end of 2019 into 2020, he had another surgery to remove a feeding tube placed in his stomach which led to many complications and MRSA. For what was suppose to be outpatient surgery, turned into a 3 week hospital stay with 2 additional surgeries in that time. They also noticed his blood work was very abnormal and this was the beginning of another diagnosis called ALPS. ALPS is when your body destroys other blood lines and essentially kills your immune system including B cells and T cells. Long story short, the doctors had told us that lightning struck twice because neither diagnosis was related to each other. He has been through so much within the past 3 years with his ALPS diagnosis, not even counting the heart defect he was born with.
There has been countless hospital admissions, blood work, procedures and treatments. He is currently receiving monthly treatments that target his B cells and T cells. But he has done it all with that smile on his face and a determination I wish I had. I remember when it came time to think about Kindergarten, I was so beyond nervous about letting him out of my sight. But I knew I had to let go so he can develop socially. We struggled with where he would go. We decided to go to St Mary’s open house because my cousin attended there. It was all so overwhelming seeing him in this big building. But he just fit right in. We felt the energy and safety we were looking for and knew he would be in good hands. His first day he came home telling us about his best friends Patrick, Michael, and Chase but yet he couldn’t remember his teachers name! He has loved St Mary’s since and his friends and we are so grateful for the support they have shown us. I need to thank so many people. I want to thank his classmates and best friends for always making him feel included and encourage him to be his best. I want to thank his classmate’s parents who I have built such close relationships with. You all have been right there by our sides cheering Matthew on. I also apologize for the amount of time your kids have been gaming with Matthew…
I also want to take the time to thank a very special and influential young lady we have grown so close with. Our sweet Gemma! She is a warrior all on her own who demonstrates what it’s like to fight a battle and come out on top. She always checks in on Matthew and that really gives him a boost when he needs it most. I will never forget stopping to see Gemma while she was inpatient at CHOP before one of Matthew’s appointments, and we walked in her room which one we stayed in for 2 months when Matthew was 3 months old. They both have so much in common, but it’s not only what they have both dealt with in life.. it’s how they continue to march on and defy odds. I want to thank Mrs Shattin our principal. She was Matthew’s 2nd grade teacher when this all started. She carried his backpack for him when he couldn’t lift anything after surgery, stopped by our house to give him his work and check up on him, and her support hasn’t stopped since.
I need to thank the committee who has worked so hard on this fundraiser. Nicole, Kim, Linda, Sara, Tristan, Liz, Kristen Lalli, Kristyn Polishan, Dana, Susan, and Jenna. This has blown us away. The amount of time and effort you put in is just beyond words. You are all so special to us and we are forever grateful. We want to thank everyone who volunteered their time or make a basket or donate a gift card. We are simply blown away by your generosity and support. Last but not least I want to thank our family and friends who have been with us on this journey since the very beginning. You never stop giving us the support we need and we can never thank you enough.
So many will say to Matt and I “I don’t know how you don’t it”… the reality is we don’t get a choice. God put him in our lives for a reason and we will do whatever is necessary to give him the life he deserves. He has taught us so much in his 12 years on earth and has gone through more than most people do in a lifetime. He is our miracle and for that we are so grateful and blessed. I think the amount of support in this room for Matthew shows you just how special he is. So from Matt and I, we just want to say thank you and God has sure blessed us with the support from each and everyone of you
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