Freddie Charles John Algate was born on the 19th of July 2013. We didn’t know he had Epidermolysis Bullosa, let alone heard of it. Freddie was born with no skin on his hands or feet. He was taken from us and in to special care. No one knew what was wrong with him until one doctor said, “Call Great Ormond Street EB specialists.” By 8 o’clock that evening they were there.
Freddie’s dad was crying constantly, but twenty minutes after having Freddie I just went in to super mum mode. I got up and walked to the special unit at the end of the ward that he was on and stayed with him. When the EB nurses turned up, they took us and told us what he has and how things could be but by 9:30pm I had mastered the dressings and that was it…no one was touching my butterfly!
In the beginning, we were doing his dressings first thing in the morning and last thing at night. He was in special care for ten days, and by day three I told them I wanted him in the room with me as I had taken over his care and they were just giving his pain medications. I had him in with me and I felt amazing! Finally I had my baby butterfly all to myself and his dad. His big sister came up to see him and was in tears that she couldn’t hold him. She was five years old at the time but very grown up. I tell her the truth about things and she understood.
When we got home, Freddie was ten days old and it was very hands on. His dad was still very shocked and Sophie just couldn’t handle how much of my time he needed, so she was staying at my Mums a lot but we battled on.
By the time he was nine weeks old, I new something wasn’t right. His EB flared up one night and he was covered. That’s when we took him to the hospital. He stayed a week with them, but they were doing nothing and I was begging them to send us to the EB specialists. He was extremely anemic, and looking back we should of known. He had a blood transfusion and we were finally sent to the main hospital I wanted us to be in. I broke down because they just new what to do!
Straight away he had a skin infection, then caught a viral infection which was causing him to not breathe very well, and then he caught another infection. By this time, I had seen Sophie about four times in three weeks, so it was extremely hard.
The nearly two weeks that we waited to find out what type of EB he has was the worst two weeks of my life. Then my heart felt like it exploded, “Jenna, Freddie has Epidermolysis Bullosa Simplex Dowling Meara (EBSDM).” I broke down and held him so tight. I thanked God he wasn’t going to die! He was going to be fine…I am going to make sure of it! Sophie cried and cuddled him.
Dressings were twice a day until he grew his skin back. Now it’s once a day. I’m so so proud of my butterfly because despite all the pain, he is an extremely happy baby!
Published on April 20, 2014: Meet the 8-month-old Boy Who Can’t Be Cuddled By His Mum