It has been a little while since I did an interview piece as I have been so busy but today I get you introduce you to a good friend of mine, Rich. I asked Rich if I could interview him about life as a parent of a child with a chronic condition. Rich’s oldest child, Josh, is nine years old and has a genetic condition (he explains better than I can later on). Josh has had to spend quite a bit of time in hospital and I was interested on the impact this can have on their family, as well as seeing what kind of support there is out there for families in this situation and how the doctor’s treat Josh and whether they allow him to advocate for himself in as many decisions as is appropriate and possible.
1 – Could you tell us a bit about yourself, and your family? My names Rich, I’m 34, live in Derbyshire. Been with my partner Amy for 16 years and have 2 children Josh who’s 9, Ellie who’s 6 going on 16!
2 – What condition does Josh have? What symptoms does this cause? He suffers from Mitochondrial DNA depletion of the POLG1 gene. Basically it’s a genetic condition which has formed from a defective gene. There are varying severities of the condition, luckily for Josh he mostly suffers with muscle weakness. He cant walk and doesn’t eat nor drink so is TPN dependant.
3 – What have school put in place to help Josh? He goes to normal mainstream school and they are brilliant with him. He has 1 to 1 care whilst he’s there. He has regular input from OT, Physio, and other professionals.
4 – Has Josh ever been a victim of bullying? Does this worry you? No never, all the children in the school know him, and they all think hes ace. It does worry me when he goes up to secondary school that he may suffer bullying more then. But only time will tell.
5 – How good are Josh’s doctors at talking to him about how he feels, as opposed to asking you? They’ll always ask him first how he’s doing whenever they see him and he’ll generally answer them correctly, unless he’s after sympathy then he lay it on a bit thick with his answers and they then look to us for an answer.
6 – How does Josh’s condition affect the family? Not as much as you may think. We do have to plan things more detailed, having to think when meds are needed and TPN will finish etc and obviously there’s things well never be able to do. But you have to adapt your way of life. Ellie misses out on some things, like places to visit as Josh would be bored or its not easily accessible in his wheelchair.
7 – Do you think Josh would benefit from talking to/being in contact with other children with the same condition? Is this something which has been offered to you? At this moment in time no, maybe as he gets older it may do. Its been offered to us yes.
8 – As Josh’s parents have you been offered emotional support? Do you speak to anyone else with children who have the same condition? There’s been mention of groups etc but we’ve never felt the need to go to these. No we don’t
9 – Is Josh able to make decisions about his own treatments. Obviously as his parents you and his mum will have the final say but do you both take his views into consideration? What about his doctors? No he’s not, he doesn’t understand his condition at all, to him it’s normal and all he’s ever known. The doctors mainly run things past us, ask our opinions, which a lot of the time they ignore anyway!
10 – I hear Josh’s sister is quite the little nurse! How does she cope with everything and do you ever feel that she misses out on things due to Josh’s condition? She really is amazing! Shes a whizz when helping set up his TPN and doing meds. She takes it all in her stride, we have tears when Josh has hospital stays as she doesn’t want to leave me or her mum. But as a whole she’s brilliant. She doesn’t miss out on all that much, she’ll go places with her mum while stay at home with Josh.
Questions for Josh
1 – Do you enjoy school? What are the best and worst bits? Yes I do enjoy school lots, my best bits are doing Art, worst bit Maths as it hurts my head!!!
2 – Are the doctors you see friendly? Do they listen to you when you ask questions or want to tell you something? Yes all the doctors that come to see me are nice! There’s lot of them. Yes they listen to me when I talk to them.
3 – Who are your best friends at school? What do you like doing with them? My best friends at Mia and Alix, I like playing with them.
Thankyou so very much to Rich and Josh for answering my questions. I agree with Josh about Maths and I am really pleased that he is doing so well and enjoying life and school to the full. He is a very inspirational little boy. Good luck and lots of love to this lovely family!