What is it like to live with, and love, a child with a mitochondrial disease?

For Mother’s Day 2019 we invited one of our most inspiring mito mums, Zoe, to give us a very heartfelt and honest write up of what it’s like to live with a child affected by mito.

My life at 40 was simple: I worked, I went away with my family, I did everything I wanted to when I wanted to. Time was mine and I had plenty of it.

However, my life soon changed when my daughter found out that due to her health she was unable to directly care for her son, Daniel. As a parent I stepped in and brought Daniel home. Special guardianship was granted, and my four-month-old grandson moved in, changing my life for the better.

At first everything seemed OK. Other than never getting settled, Daniel seemed like a healthy little boy, but how life changed. I’d tell you truly how I feel if I knew myself, but with this disease you never know the full story. It seems to write itself; it takes so long to get a full diagnosis often it’s too late to deal with because you’ve already found your way through it and lived the day out.

Daniel is a happy child, and in his own way he has shown me how life is. He opened my eyes to life as I’d always – as others do – taken it for granted, and never really appreciated what I had. Easy come, easy go, but for someone like Daniel time is precious and not just time, but good, quality days. I can honestly say I’ll never moan about anything in my life again.

So, a bad day in the life of Mito from my perspective. It’s a disease that can be so different for everyone who suffers with it, but this is our experience.

Getting up after dealing with the most unsettled night. A child that is unable to tell you of the pain and how he truly feels. You get up upset and already tired knowing it’s going to be a long day, but not for you, for your child. He sees you and just wants to be held. He can’t stand, sit or walk. Daniel struggles with the easiest of things, and even when holding his head, he gets frustrated and agitated. He just needs love.

When he’s in pain all you can do is be there for him, give him medicine when he needs it, hold him tight, show him love. The morning is long; he’s nearly three but in Daniel’s world he’s a six-month-old on a good day. You do the usual routine: wash, nappy, teeth, but then you have the feeding issues. A button to clean because he can’t eat; that’s one of the hardest parts, and something that we all take for granted – food. It goes in your mouth, you swallow, you survive, you grow, but not with Daniel. He’s peg fed and is attached to a pump 24 hours a day and gets high calorie milk straight into his tummy. He has a hole with a tube into his tummy, and it’s always sore. He has frequent MRSA so it takes a lot of care cleaning and bathing. Daniel gets dressed and needs something that fits around his tube that’s easy to keep clean. He grabs at his tube trying to rip it out and your heart breaks again. You want it out too but it’s keeping him alive.

Bags to pack with things for the day: milk, tubes, medication, clothes, dressings etc. heavy bags with a child who isn’t able to support his head or body is not a good mix and you struggle loading the car with a child who cries because all he wants is you, and so several journeys are needed to take Daniel and bags backwards and forwards. That thought that maybe it’s better to stay at home, but you know your child needs to go out. You now prepare for the screaming. Daniel hates the car but everywhere you need to go, specifically appointments, are miles away. On a good day we might only have one appointment, but on the bad days when we have several appointments you feel heartbroken as we travel miles and miles and still no answers, no cure, nothing – but you live in hope.

Daniel’s has a great team around him: physio, nurse, occupational therapist, doctors, health visitor, speech and language therapist – the list goes on. You get to where you go, there’s equipment to unload, it’s all heavy. You can’t get parked because there isn’t enough disabled parking, it’s too far away or someone who doesn’t need it has taken the space. You hope it’s a day without a seizure; these themselves are soul destroying. Vacant times holding your child wanting to know if they are OK. Can they hear you? What’s happening to them? You hope it won’t last long.

Hospital visits, blue lights, choking, chest infections, heart murmur, Christmas in hospital, birthdays in hospital, pain, tears, frustration, more tears but not long until bedtime hoping tomorrow will be easier for Daniel; he’s been so brave to get through such a day.

How much heartbreak can you take and still have no idea why or how long for, what’s causing it all? No answers, just frustration going round and round. What’s caused it? Why us? There must be something. Someone please help Daniel; he’s only a child.

You don’t want it to be so bad you know people who want answers will be reading this, thinking is that going to be me? I’m just like that or even worse I know it gets worse, this is the hardest part don’t read anything on the Internet it will only break you it all seems doom and gloom and it’s always heart breaking. Daniel goes to bed at 9pm and you’d think it’s time for rest, but not for us. It’s time to let it all out: the tears, the pain, the anger, the heart break and most nights you’re up as Daniel needs you. You have to work for money to pay the bills, and for new things that could make Daniel’s life a little easier.

So what are the good parts . . . ?

Daniel is beautiful inside and out. He laughs, and when he does my heart melts along with those around me. He smiles at me telling me he knows he’s loved and I’m there. Daniel needs me; he truly can’t do anything without me, but he appreciates everything I do and acknowledges me with his love and laughter and cuddles and kisses.

Daniel gets through the day as a brave little boy with a huge heart, and holds onto you so tight and keeps going. He melts other hearts around him. Daniel’s needs are simple: he needs care, he needs love, and he needs interaction. He’s here, he’s fighting, he’s taking every day and making it his, creating his own destiny, memories, footprints in people’s lives. Daniel is loved by others, and I get real support from people who I’ve never met that talk to you in the street, or at hospital appointments. Strong friends who have children like Daniel who once were strangers but are now our extended family. The Charlie Gard Foundation, and Charlie’s family, who have suffered but want to help even if it means reliving the bad times to support others who need their experience and understanding.

What is good about Mito? It makes us fight; joins us together; shows us the good things in life when facing the bad; it shows us that by having children like Daniel, there is good beyond the bad, light in hours of dark and a friend to pick you up when you are too tired to go on. It shows you what charity is all about and why it’s needed in a world that we live in. Daniel’s good days show us strength, and from a boy who is still learning he teaches others so much. Daniel, who beyond anything and the unknown won’t give up fighting to show us how precious life is and how memories are made. Those days of celebration are every day for me, because he’s here xx

Zoe is currently fundraising for a special hydrotherapy pool for Daniel with the help of the Charlie Gard Foundation, to help with his quality of life. If anyone would like to show their support for our wonderful mito mum, or find out more about fundraising for Daniel, please visit his Just Giving page here.

You can also follow Daniel’s journey on his Facebook page here where you’ll find information on the latest events taking place to help raise funds for Daniel.

From all of us at the Charlie Gard Foundation we wish Zoe, and all of our mito mums, a very special and beautiful day.

#YoureNotAlone #MitoMatters #BrighterMitoFuture #CharlieGardFoundation #BarnsleyBoy #HopeForDaniel