The first care givers interview I have done was with Lesley Jeal. I asked her a series of questions about her and her husbands life raising their son with Mitochondrail disease. Please be aware this is her story.
Learn about her sons mitochondrial disease here:
What is your name and tell me a little about you.
My name is Lesley Jeal. I am married and have a great husband. LeyLand our son he is eight we also have a four-year old, and a nine-year old we care for.
Who in your family is sick and how old are they?
Our Son LeyLand has rare diagnosed.
What kind of diseases/invisible illness do they have and what does the illness they do to them?
Leyland is our son he has a Mitochondrial disorder, pyruvate dehydrogenase mitochondrial complex deviancy. Wasn’t diagnosed until he 5 he became symptomatic at 9 months old. It takes a long time before being diagnosed because it’s rare. He had been diagnosed with autism diagnose PDH when he was 5. He can’t process carbs or meat so we played around with his diet. His mitochondria doesn’t have pyruvate enzyme. He would get worse and worse because he wasn’t able to break down the carbs due to the lack of enzyme. He would walk around like he was drunk because of what food was doing to him. I make everything from scratch, because at the time there was no gluten free food. Changing his diet helped. Three months later Leyland is talking. I realized food had a lot to do with everything. People who were restricted did better.
People who didn’t take the immunization did better. I didn’t immunize Leyland. When my youngest was born we didn’t know what Leyland had. The intoxication stage was said to be a brain virus. If he didn’t get worse it would go away and we wouldn’t find out what it was. After the positive pregnancy test Leyland became symptomatic.
There was a mystery diagnosis show on the diagnosis of what my son has and that gave me hope. You only have the ability to one or two good friends that get your complicated life. When he was diagnosed he went on a keto diet. It’s a dangerous diet. Seizures disorders can go down on this diet. He has been on the Ketogenic three years. Hasn’t had an episode since. Gastrobugs, or chicken pox, but he is doing better. Tests and diagnosis can be life changing. My husband and I know what each other are thinking so that really helps us.
What is like for you living with and taking care of your loved one? A full time job. More then parenting. When you are off you brain never shuts off. When you got a sick kid you are always getting phone calls and texts.
When did life change for you? 9 months after he was born.
What was life like before disease?
Happy go lucky. Once he became sick I became constantly on edge. You don’t trust anyone because you have to change the whole way you parent. He couldn’t go to daycare, got my grandma and parents to take care of him. No one knew how long we were going to have him. Therapist said my expectations are to high. My expectations are different then my other parents are good parents that have common sense.
Please describe the best you can what a day in your life is like? You survive and go to what’s most important. Make sure meals are on time, kids are going to bed and sleeping and taking meds. Lowest priority is bath we have a respite worker for that. I want my kids to have fun. Experience is the most important thing.
What was/is the most challenging thing you have faced with having an ill loved one? Lack of understanding from others. Lack of support. Professionals down playing you, and don’t understand why you don’t put blinders on and live life.
What would you tell others about what it’s like living with someone who is ill? You have to find someone going through the same thing. I didn’t find support until Leyland was 5. I found a support group. You have to know you are not crazy.
What have you learnt on your journey?
When your child gets diagnosed the first thing you do is grieve. You want you’re kid to graduate, get married have kids. But all that goes away when your child is diagnosed. That is the hardest part. It crushes all your dreams for that child. You can’t have the same expectations. You don’t know if the next hospital visit is death. Took me six months to grieve. The diagnosis and the loss is just like a death. All your hopes and dreams just died. We can’t plan ahead. We aren’t a loud to travel because he is sick.
Is there anything you would like to add about your journey?
Lack of family support. They are going through their own grieving and forget about everyone else.
I thanked her for her time and sharing her journey with me.
I hope that this has helped to open eyes of those whom have not heard of mitochondrial diseases. Thank you for reading and stay tuned for more interviews. I am remaining hopeful always.