Kam's Journey (Gabriella Rose Marvin)

All money donated to Kams Journey will go to Mitorchondrial research and the POLG gene, and to raise awareness.  

Her life ended way too soon, 5/21/23, at only 17. 13 years leading up to this were full of pain, questions, and answers that were not answers. At a very young age, she always complained of stomach pain, and sometimes nausea and vomiting. What I noticed first was her inability to actually gain the weight, and she was always tired. Couldn't keep up in gym, outings, or with friends. Watching your child suffer is no fun, and our journey for answers began. Doctors upon doctors - even genetics, that had told me there was no reason to look further with no real answers.  

With all this going on and no answers, school refusal and accusations, her mental state started to become an issue as well. We were at a loss until our new GI doctor found she had a pancreatic deficiency; meaning her body was not absorbing fat. This to us was an answer, but I realized quickly it was not the whole picture. Still with nowhere to turn, we did what we could to help her.  The enzymes she took helped her gain a little weight but not a lot. After a few years the GI doctor had us go to NYC for a full GI work up. With this, they found she had SMA syndrome, which was another answer as to why she was always sick and couldn't hold down all food. Her passage was being pinched off and food could not pass through.  

We switched doctors so that I could stay in NJ with her while she would be set up with PICC line and TPN. I became her nurse and set her up for 12 hour TPN every day to get nutrients into her.  This was the best thing, she gained 10lbs in 4 months, she was up to 96lbs. We went for doctor visit early this year, and he was afraid of an infection and took the PICC line out. This caused the beginning of her rapid decline and she lost 15lbs in 6 weeks. She declined rapidly to the point she couldn't keep anything down and was throwing up bile all day long. I took her to the hospital where they told me she was only dehydrated and sent her home the next day. I took her in at 81lbs. We went home for a day and took her right back.  She was now 79lbs. For 10 days she was in a NJ hospital. They did surgery and gave her a GJ tube. After a day or two that coiled up and they had to go back in and fix it. 2 days later it happened again so they put a longer tube in to help keep it in place. It coiled up again, so they took it out. Now going on two weeks where she has had NO food and declining, they decided to get her TPN again and send her home to strenghten before having another surgery.

First PICC line in Sept 2022          We were home for one day and my mom and I took her to CHOP, one of best hospitals in the country. She could barely walk at this point. From here it was a whirlwind. We arrived 3/22/23. Within 10 days we were moved to the PICU in the middle of the night. 2 days later she was fully septic and rushed into emergency surgery. They took out a big chunk of her intestines and knew they had to go back in in a few days to finish up. Her amazing doctor, Dr. Hendrick, knew she had never seen anything like this before. Something was eating away at her intestines and was missing the muscle surrounding. 5/1 genetic testing came back she had MNGIE, which explained a lot. It is extremely, extremely rare, with no cure. At this point she had about 6 major surgeries already. If it had been found earlier they could monitor it and have helped her. She ended up with 8 major surgeries, and 7 minor (including the NJ ones) the last large one took out all of her intestines. She ultimately succummed to a yeast infection. They are aggressive and will come from the gut. She had so many tubes coming out of her, and could have been in any or all of them as well. She fought so hard, she did not want to let go. For making it through, fighting through all the surgies, to have an infection take her is so frustrating. 

Nana loved to read to her, and she listened intently. This was her last day with us.

I never want another parent to go through this ever. If my daughter can leave a legacy and help another child live from her case, it would bring meaning to her untimely death. The doctors have been so great at CHOP, and I know they have learned from her as well. If we had been informed about this specialized hospital earlier, things would be so different now. 

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