Matthew F.
Illinois
Birth Date - 11/16/2010
Diagnosis - Severe Intractable Epilepsy
Matthew's Story
Matthew was developing fine until he was 3 years old. He had his first grand mal seizure in the back of my car while taking a nap. The seizure lasted about a hour and half before paramedics were able to get it under control. The hospital near us didn't treat children in Matthew's condition. We were transferred to Dr. Katerji at Oak Lawn Hope Childrens Hospital. After a year of care, this doctor no longer knew how to help Matthew. When we went in for an appointment, we were approached by a social worker saying ... sorry but Dr. Katerji no longer knew how to treat my baby. We were absolutely devastated.
During our search for a new neurologist I got a call from his daycare. Matthew took a nap and woke up unable to stand or walk. They had helped him up as usual and walked away. He fell into a bookcase. We rushed over right and rushed him to the University of Chicago Comer Childrens Hospital. We met Dr. Marculli. He has done everything to try and control Matthew's seizures. Every time he treated one type of seizure another came back. In January 2017 my son took a huge turn. He started choking on all foods and later refused to eat period. In May 2017 a g-tube was placed. He had eaten for 6 years, and no longer being able to eat was heartbreaking. It didn't end there. Within six months he lost everything ... the ability to toilet himself, eat, talk, use his hands, open or close doors by himself. He was stuck in complete depression, and were too. We couldn't do it anymore ... watching our boy lose everything and being so depressed he no longer wanted to be a child.
We left our home and went 1000 miles away to go to Boston Childrens Hospital hoping they could help him and work a miracle. We spend Christmas here. I want my baby boy back and I will do anything. I pray a thousand times a day that they will resolve this so he can be a child just like anyone else.
August 2018: UPDATE requested but none supplied
Quilt was donated by Cross Stitch Addicts group.
"Matthew got his love quilt today! Each piece was stitched by hand just for him. It is so amazing & beautiful, and I wish I could thank each one of them who put in all of their hard work and love to making this very special quilt. The very sweet lady who did the quilting lives close by. She personally dropped it off and got to meet Matthew. I’m so happy we got to meet you Nancy! You truly are a beautiful person inside and out. I will never know how to thank you enough. 💗"
