HD Australia

Hi everyone,

Just want to remember Bailey, my 11yr old who lost his battle with JHD a year ago today. I was told that he was checked on when the overnight carer left and he turned his head and smiled at the person leaning over him and then went back to sleep. He didn't wake up, when they next went in he had gone.

I am glad the last memory of him was a smile, his passing was peaceful with no pain or distress.

Although his fight ended ours continues as we make the world aware of JHD and HD and lets hope we see a cure in our lifetime.

Love you Bailey with all our hearts, say hello to Kieran for us.

Love

Mum and Dad xx

Hi Debbie,

Thinking of you, today especially, on Bailey's angelversary. Bailey's photo is beautiful - such lovely eyes and enchanting smile.
You are an incredibly strong and resilient woman, Debbie.

Love,
sonnie xx

Thinking of you today too, Debbie,

Sal xx

Thanks, sorry the photo is so big though. It wasn't meant to be that big, makes me want to reach in and hug him though.


Buddybird

Debbie, The photo of Bailey is absolutely gorgeous. He was such a beautiful warm hearted little fellow. That big smile makes me want to reach out and hug him! I loved my Bailey hugs   

You do a wonderful job continuing to share Bailey and Kieran with the world and raising awareness of JHD. You are an inspiration Debbie. Kieren and Bailey can rest from their fight now but they'll always be in the hearts of those who met them, and those who continue to meet them through you.

I remember Bailey saying to us the day we met him, that Kieran was in his heart. He certainly was an incredibly special little boy.

Love to you and Anthony..and your family on this day Big (((Hugs)))xxxx

Hi Debie,

Just wanted to say that I am thinking of you and your family today. The phots is absolutely beautiful, what a great little guy. He has a gorgeous smile, big beautiful eyes and that thick head of hair, just gorgeous.

Lots of love,
Mel

Thank you everyone,

I sometimes feel I overdo it talking about the boys so it's nice to hear you say you like me sharing them with you.

Yes Bailey always used to say "we all miss Kieran" and I would say he lives in your heart now and put his hand over his heart to emphasise it. It is hard to explain to a 4yr old where their brother suddenly went.

His teacher emailed me today to say she would shed a few tears remembering him, I have one of his wrist bands he wore (sweat bands) by my bedside and every night after I turn off the light I smell it and feel I am breathing him into me before I go off to sleep. I have an angel hanging over my head with Kieran written on it too. His teacher has a sweat band she smells and keeps in her pillowcase.

I didn't realise he said that to you, I remember you being fascinated by the difference in JHD and watching him with interest as your experience was only with adults. For me I only knew children so it was an eye opener to see an adult with HD as I'd never seen one before.

Sorry again about the size of the picture, I have loaded picture project so I can start experimenting with sizes of photos again. I wondered why suddenly I couldn't - my day wasn't all sad and depressing as I kept busy with the phone ringing all day.

Love to you all

Debbie xxx

Sorry I'm late to say thinking of you & Anthony & all the people Bailey touched so wonderfully!!

I think of you all lots of times & you always insire me Debbie with all you do & give to so many people, thank you so much. You sharing your story has helped lots of people & given lots of us insight into JHD.

THe Photo was amazing & the sze was great as we all wanted to reach in & give him a big hug & respond to that cheeky smile. Thanks again Debbie & love to you & Anthony. Tell him John says good day mate.

Hi Debbie, thanks for sharing. Even though I never met him I have been following your post since I joined this forum. Every time you mentioned your son’s ups and down always leaves a lasting memory that stamps on my head. And I agrees with what you said – that no greater joy will give us on our lifetime but a cure of this disease.