Francis had dilation of the kidneys in utero so the doctors knew there was an issue ( unsure of what it was ) before he was born. As soon as he was born, he was unwell and was admitted to the NICU.
He had a lot of wee things wrong. He couldn't regularise his heart beat, couldn't regularise his sugar levels wasn't able to suck which meant he couldn't feed. He had a lot of issues. Doctors had him on Iv antibiotics and then antibiotics for the next 6 months for his kidneys . At 3 weeks old he still had a lot of these issues. I noticed his head was growing too large. He wasn't doing things that a baby of 3 weeks should do. That was the first time I went to a doctor and that's when the fight began. I was ignored by everyone because they felt I was being OTT because his older brother Christopher has Down syndrome. At 4 months and 3 weeks I finally got a doctor to see there was something wrong.
At this stage he was taking episodes. We now know these are seizures. He wasn't feeding properly he wasn't moving his legs at al. Hel couldn't move his head because it was so large and wasn't fixing and following i.e no eye contact at all. They tested every blood test they could think of everything came back ok. They ruled out fluid in the brain so I was sent home and told he's a "variation of normal" and could just come on. I went to Derry at a year for a second opinion they felt I had huge problems and were honest to say that things will get worse and never better. The same was said to Letterkenny. At this point I was referred to the early intervention team . The physio referred Francis to the CRC team in Dublin. They said on that day when they seem him that Francis has big big problems physically and mentally. They referred him to Temple Street Children's Hospital straight away.
Francis' First 3 Years
The doctors and the testing that came in the next two years were hard. Emotionally and mentally. I found the first 3 years of his life damaging. I doubted my own mental health on a daily basis. Every doctor said he was ok every test they said came back uninclusive or non-specific. I felt I was having a break down inwardly. It's very hard to explain the damage it does knowing your child is ill and thinking in some way your causing it and that no one else seemingly can see this. So when I was told that he needed to go to Dublin that he has big problems I found a massive sense of relief. But the doubt on my self and Francis is still there. The mental anguish and the loneliness I felt those first 3 years I still feel. it's very damaging to put parents through this.
When Francis was 3 we were informed he had mitochondrial disease. We were sat in a room. Myself, Eddie (his father) and Francis along with one doctor and told this disease is a progressive disease which means he will get worse and the severity of Francis means this process won't take long and he won't be able to sustain life. The pain in my chest that day was beyond any pain I've ever felt. I asked how long we have and how will it start. He told me honestly not a lot is known it could start anywhere in his body more than likely with reoccurring chest infections . But there was no way to know how the disease would affect Francis I was told from what they could see the process had started and they felt I'd be lucky to have him at 6.
Fast forward - Francis turned 6 in May this year and thankfully his seizures are very well controlled due to 3 types of medications. His swallow still isn't good but he manages puréed foods. He is unable to swallow fluids. His fluids have to be thickened to yogurt consistency. He's on a cocktail of vitamins. He has no mobility or communication but is aware of his family and surroundings. We understand him even tho he can't speak. He can laugh and he can cry he can fill a room with his presence. He can control everyone around him. He has changed our view of the world of life and of happiness. He makes us realise the importance of family love and support. He does all this without speaking but shows his strength that's in him.