I Wish Someone Listened..

[mitomum]

We very recently lost our little girl ,she succummed to the disease that had already robbed her of so much...a metabolic disorder.
I am writing this post as an invitation to help each other as no one I knew would accept that we were going to loose Gabby and that left me feeling very alone with my thoughts.....
I wondered how would I cope, would I break down, and the nervous stress was terrible while she battled along I too was battling trying to come to terms with the inevidable....
So if everyone who is facing this would ask the questions that no one around them will help them face... we might find answers and support for each other..

[BeatoNo3]

Sorry to hear of ur loss.. We have come close so many times n have 2 but fortunely medical times turned things round... I have a son who is fed 24/7 via peg n IV. I am not able to help u but jsut wish to share the compassion on hvaing sick kids n how hard it is... Hope things look up soon...:hugs::hugs::hugs::hugs::hugs:

[Nowhere]

oh hun i am so sory to here of your loss, Im so sory your little princess lost her fight to Mito, Its such a nasty disorder that there is just not known enough about it. Im so so sory

We are just waiting on biopsy results for my DD to find out if she has Mito or not if its not mito they have no idea what as she presents that same way

[IndigoJ]

:hugs::hugs:Im So sorry for your loss :hugs::hugs:

[ElizaDoLittle]

I am so sorry that you lost your little girl. I can't imagine that pain :gloomy:

[ThisIsLiving]

I am so sorry. :hugs::hugs::hugs::hugs::hugs::hugs: and a billion more.

[reAllytee]

I havent any answers or wisdom but just wanted to say welcome to BH, I hope that we can at least offer some support & hopefully there are others out there who will be able to help you more.

:hugs::hugs::hugs::hugs:

[kmommy]

I'm so sorry for your loss. I know that your sharing your daughter's story will definitely help others and yourself too. :hugs:

[Christelle]

Hi,
Just wanted to say how sorry I am for your loss. :no:

I know how difficult it is at first. It's such a roller coaster ride and you go crazy asking yourself "why us?". Believe me, I have had 4 years of trying to find answers.

We lost our baby girl Aliyah in 2005. She had a rare blood disorder. You can read about her at her website www.aliyah.com.au (http://www.aliyah.com.au)

I am here for you if you ever want to chat. My email address is cdardagos@hotmail.com

[MumTotzlj]

I'm so sorry for your loss.

I lost my little boy Zac, he was 12 days old. Zac had Hypoplastic Left Heart Syndrome. You can read his story at http://families.hearts-of-hope.org/zac

If you would like to chat my email is orchid_21@ihug.com.au