My gorgeous girl

[Flossie44]

I just don’t know where to post this. Or even why I’m doing so. My gorgeous girl. Aged 11, has some kind of progressive condition. No one knows what. She’s had sooooo many tests and procedures. Spends so much of her time in hospital. We know parts of her don’t work properly. Her body is so weak. But the biggest thing is she stops breathing several times a week. She’s so bright and ‘normal’. Yet her life lies in the balance constantly. To look at her you’d never know. She’s on about 14 meds a day including tablets, inhalers, injections and nebulisers. She’s so brave. I just wish I could capture some of that bravery right now. I cope most of the time but occasionally I crumble. Now is one of those times.
How do I face this?! How?! She’s so perfect, so beautiful. Yet at any point she may disappear from my life.

I don’t know why I’m posting. I guess I just keep this inside so much. I just am not sure I can anymore.

That sounds tough @Flossie44
It's amazing where you get strength from when you need it.

My heart goes out to you and your beautiful DD. I hope that you are able to make some memories with her - although I know that sound trite when you must be going through hell.

Very sad indeed and I'm so sorry for her and for you.

Your beautiful daughter has a beautiful mum. Your love shines through your words and I wish you many, many years with her.

I know it's hard now with no diagnosis but try and reach out to charities or groups with similar illnesses because then you get a chance to speak to other parents that really understand what you are going through. There is a group Called SWAN syndrome without a name and they can help.

That's so sad, I know these are just words but I cannot begin to understand what it's like.

Make memories and treasure every day.

Are you part of the genome project for rare diseases? There's a chance someone else has the same condition so they are creating databases - it may not be any help but it's a way to try to get answers

Also have they looked at her mitochondrial dna, I'm not a dr, h is a medical researcher working on this.

I feel for you, It is so hard to have a much loved child so ill .My heart goes out to you ,and hope that they may make some headway .Have you looked into going abroad for treatment at all ? Crowdfunding maybe Sounds trite ,but just enjoy every precious moment together . Will be praying for you .Sending hugs and love to you both xx

So sorry - I really do understand that feeling that some days it is all just unbearable. Stay strong.

I'm so sorry to read this Flossie, I can't imagine how hard this must be for you. I hope that you are getting some support for you and your DD

If only we knew what was causing it all, then I’d move heaven and earth to get the right treatment for her. She’s inspirational. We’d also be able to gain support from similarly affected families.
Mitaxhondrial Dna hasn’t been looked at. Isn’t this the energy stores tho?? She has plenty of energy..just some Neuro muscular thing that’s causing major issues. But can’t seem to find what source.

Have you tried other countries try email top children’s hospitals google best in world my niece has been very ill they kept saying didn’t know what was wrong she turned out to have some very rare sort of anemia that the doctors in London had only ever seen once before we had to fight so hard to get her referred if she had been left at our local hospital any longer I don’t think she would be here today your daughter needs speacialist help dna test and every other test possible she may have a mixture of combined disease ie autoimmune could be so many possibilities but look further a field look for speacialists that are interested in unusual cases good luck

Hi Flossie44 just came across your post today. How are things? Do you have any answers moving forward? I hope your daughter is as ok as possible & you/wider family too?

I have an 11 yr old with a neuromuscular disorder & we have been waiting for a diagnosis since she was 6 months old. So hard.

Thinking of you x