Mighty Marty's Warrior Fund

Katie and Matt have been close friends of mine for years. They are an amazing couple and have an even more amazing son, Marty, who was born last March. He is one of the strongest little guy's that I know and has fought a very hard battle so far in his short life and, unfortunately, faces a very hard battle in the future. 

My mom, sister, and I would love to help out this little family in any way that we can and show them the love and support that they have behind them. We cannot imagine what they are going through emotionally, mentally, etc. and would love to be able to ease some of their financial burdens. If you are not able to give financially, that is fine! But, please keep them in your prayers (especially Super Hero Marty!) as the fight is not over yet! We know that they appreciate every single thought and prayer that comes their way!

The following was written by Marty's phenomenal momma, Katie about their journey so far: 

We would like to start by telling you a little about us. Matt and I started dating in 2008, we were introduced through mutual friends while I was getting my undergrad at Bloomsburg University. We dated through me getting my Master’s Degree and even managed to make it through a long distance relationship when I moved to Virginia where I accepted my first teaching position. Little did we know that us having a long distance relationship wouldn’t even come close to the biggest challenge of our relationship, or that it would help us prepare for our future. I ended up moving back to Bloomsburg and in 2014 we got engaged! In June of 2015 we decided to get a dog and we rehomed a 1 1/2 year old male boxer puppy named Deezol, he is incredibly feisty and full of personality. In April of 2016 we got married at a beautiful venue outside of Bloomsburg.

Here is where our story takes a bit of a turn, after the wedding we decided to try and have a baby, as Matt and I both really wanted children. We had found out that there could be infertility issues back in 2014 when I had an emergency appendectomy but were still hopeful.  We tried for a year with no luck. I underwent some tests and we were not happy or comfortable with the course of treatment offered by our local hospital. So we went for a second opinion and chose an amazing infertility practice to continue treatments with. We had to travel to get to their offices but felt it was worth it for the level of care we were receiving. I had to have 2 surgeries to rectify some anatomical issues, but our doctor felt that we would not have any problems conceiving, with the help of IVF. 

On August 9, 2019 we had the embryo transferred. We waited on pins and needles until August 20, 2019 for the pregnancy test...and it came back positive! We were elated and couldn’t wait to make it to the perfect point in the pregnancy to tell our family and friends. Everyone was so excited! The chance of a first round transfer being successful is only about 33%, which made our baby more of a miracle. We enjoyed going to the weekly appointments and ultrasounds to see our baby growing and to hear his/her heartbeat.

At our 19 week anatomy scan, we were told our baby had a Left Congenital Diaphragmatic Hernia or CDH, and we had to transfer to the Children’s Hospital of Philadelphia (CHOP) which is roughly two and half hours away to continue our care because our local hospital did not have the  ability to treat CDH.  Matt and I researched CDH before our appointment at CHOP and we learned that CDH babies only have a 50/50 survival rate overall. We were devastated, the child we went through so much to have could be taken from us at any point.  We were told that the baby had part of their stomach, bowels, and liver in the chest cavity and we were told our baby only had a 80% survival rate.  

Around Christmas time, our baby received another diagnosis of Ventriculomegaly, which is an excess of fluid on the brain. This could cause more delays and deficits.  We went to monthly appointments at CHOP and our local hospital for ultrasounds to make sure everything was going as smoothly as possible. At one point we were told the baby had formed hydrops, which if not monitored carefully can cause death. That fortunately went away by the next appointment, so we were able to breath a little easier!

On March 15th, I moved to Philadelphia to be closer to CHOP. We went for a routine ultrasound at 35 weeks and were told that we would be delivering our baby at 36 weeks and 2 days.  On March 31, 2020, at 6:00 am, Matt and I checked into the hospital and I went back around 8:30 am to start my C-section and at 9:24 am, our baby was born. We were told that we had a son. We got to look at him quickly as they were taking him to the stabilization room. We named him Martin Grayson, he was 6 pounds 6 ounces and 19.25” long.  I was closed up and taken back to my room. They brought Marty into our room where we got to see him for a few minutes before he was taken down to the NICU. We were told he was screaming and feisty before begin intubated and taken to the NICU; which for a CDH baby-was a really good sign!

The first week was full of uncertainty. We were told he was critical and there was nothing more they could do because he was not a candidate for ECMO because of the fluid on the brain. We also had a conversation with the neonatologist about the brain development and the possibility of severe motor function deficits and quality of life. Fortunately for Marty, Matt, and I, there was and still is a lot of people praying for him, and those prayers  were answered. Marty was a fighter and he stabilized.

On April 20, he had his repair surgery. During the surgery, they realized that the scans didn’t show how bad his hernia was. They had to move his organs back into his abdomen and place a large hernia mesh patch on his diaphragm to repair it.  They were unable to close him due to not being able to put all of the organs back safely, so the organs that couldn’t fit where placed in a "silo" for a week until there was enough room for them to fit and for him to be closed. 

Fast forward to today. Marty is 6months old and has had a total of five surgeries, including two surgeries to repair the diaphragmatic hernia,  a shunt placement for his Ventriculomegaly, and a shunt revision after his body failed to absorb the fluid.  During the revision survey, they drained 32 ounces of fluid out of his abdomen. His fifth surgery was to correct 2 additional hernias, place a G-tube for feeds-because the attempts to feed his stomach had been unsuccessful-and wrap the top part of the stomach around the esophagus to prevent acid reflex. 

Marty is learning how to smile, coo, sit up and tolerate tummy time. He has stolen the hearts of all of the nurses and we are so thankful that he has them during the week when we cannot be there.

It is extremely difficult for us to be away from him for 5 days during the week because of work. Matt and I are currently driving down every weekend to see him and then making the depressing journey back home Sunday night. I think that two and half hour drive gets worse every time...

We are hoping soon that we can transfer him closer to home as they continue to wean his dependence on oxygen. We are blessed with amazing family, friends and co-workers who have been so supportive through this emotional journey. We are unsure what the future holds for him.  We were told to expect some development, learning and motors delays, we are not sure of the extent of these just yet. These are due to the amount of time he was intubated, being in the NICU for as long as he has been and the Ventriculomegaly. But we are going to tackle those obstacles when we get to them. Right now, he is delayed some but his team is working towards closing those gaps.

We are most thankful that God chose us to be Marty’s parents and that we have had the past 6 months with him. We love seeing his smiles. We cannot wait to bring him home with us and watch him grow, and to hopefully not have an extended hospital stay with him again! 




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Donations

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  • Brynna Mudry 
    • $50 
    • 14 d
  • Lesley Banks  
    • $50 
    • 17 d
  • Lindsay Fluehr 
    • $55 
    • 29 d
  • Courtney Fluehr 
    • $50 
    • 29 d
  • Joanne Palumbo 
    • $50 
    • 1 mo
See all

Organizer and beneficiary

Ashley Funk 
Organizer
Catawissa, PA
Kathryn McHenry 
Beneficiary

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