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My One Piece of Advice for Parents Fighting for Their Child's Health

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For the first time in well over five years we have been away for two days and had a lovely, sunny, worry-free time.

Normally we would constantly worry about being out. My daughter Molly can feel quite poorly a lot of the time which makes things really difficult. We try and do our best so that no one misses out and so we can have good times together. But if we are out for the day somewhere, frequently Molly is tired and ends up crying and in pain, and we generally just have to leave.

Days that follow these days are awful. Molly will be asleep for days and in terrible pain. It’s been really hard for everyone, and I spend most of my time on edge at a complete loss of how to make her better. We don’t give up, though, and manage it the best we can.

Not this time! This time was different. Molly managed two days in London without causing any concern. We had lunch out and then went to the Natural History Museum. Back to the hotel for Molly to sleep and then for the first time in years we went back out in the evening for a meal!

I was totally amazed! Molly has been better than I have seen her since she was at primary school. Watching her laughing and eating, I worried had we gone to far here? That night I suspected we would have to stay in the hotel the following day because she would relapse and go back to the terrible pain, dizziness and tiredness.

But no, it did not happen! After a whole day when I didn’t worry once if Molly was still well! We had a full English breakfast, she slept for 20 minutes afterwards and then we were off out again! Riding about in cabs, whizzing about the city. Seriously, I could have won the lottery and would have felt no happier! Molly was engaged and didn’t have that vacant look in her eyes which comes if she feels unwell. Her head was up and she was laughing.

It’s only been two days but that is two consecutive days out of 365 per year, times about six years which equals about 2,190 days! 2,190 days which I have worried at some points more than others in the day because she feels so unwell. 

It seemed that this was how it would always be.

Molly still cannot walk for more than about five minutes, and she still has pain but is managing it. It’s only been two days! And I’m not counting my chickens. But the worry I’ve had on a daily basis for over five years was not there! For two whole days! And I cannot tell you how amazing that feels.

We still have a long way to go but this I believe is a turning point. I have tried everything in my power to take this illness away from her. Finally with oxygen treatment, replacement hormones, added vitamins from fruit and vegetable capsules, an air purification system in the house, weekly complimentary therapy and weekly physiotherapy we are finally getting there.

Who knows how long it will be before she will walk around again like other teenagers, go to college or even just out with her friends for a while. All I can say is at the moment it feels like we are winning! And I cannot tell you how happy that makes me feel.          

I just have one piece of advice: Do not accept that your child’s health just is how it is.

It might not be. Do your research. Try everything you can. Don’t just leave it to the people who oversee them medically. You know your child and if there is a chance you can do something that will make them feel better, take it. Doctors haven’t suggested all the things we have done. I’m not sure if it is their fault or not — I can see that they do not have the time to put 100 percent of everything in to your child. It’s easy for doctors to just give the medication and not think about them for another six months. Or maybe they think another consultant who cares for your child is being more successful on a daily basis of keeping your child well. Who knows?

But if you are not happy, find your own set of professionals. Get a second and third opinion. Read as much as you can about your child’s diagnosis and how different treatments have improved it. We have a Team Molly now and collectively these professionals I have put together are winning. Just research. There may not be a cure — Molly is far from well, but I have seen a tiny light at the end of the tunnel in the past two days. So please let that give you hope.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Originally published: August 26, 2016
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