Re: Re: Welcome Sinead and family!

February 21, 2008

Welcome to our group Sinead and family!

My name is and I am the Newsletter Editor for IMDSA. I'm also

the mom to a son with MDS (diagnosed at 2) and 2 little girls. I know what you

mean about the roller coaster ride (and I don't particularly like roller

coasters . . . LOL!). Hopefully you will find all the support and information

you need through this group and through IMDSA. If you'd like even more

information our quarterly online newsletter is full of articles and tips from

professionals, as well as first-hand stories from people who live with MDS. The

newsletter is available to paid IMDSA members and with your membership, along

with other benefits, you also have access to our whole archive of newsletters

through IMDSA's website. For more information you can email me at

slpbjones@.... For more information about becoming a member of IMDSA you

can also go to the website at www.imdsa.com.

Welcome to our group! I look forward to getting to know all about Rose!

IMDSA Newsletter Editor

Mom to Aidan (MDS) 5, a 4, 2

Re: Welcome Sinead and family!

Thank you for your warm welcome!

Our daughter's name is Rose (9 months old) and we live near Belfast in

Northern Ireland. Rose is sitting very well, loves her food (and

everyone else's!) and she is now saying Mama (Dada is still waiting!).

She loves other children and shrieks if she sees a baby on T.V.

The last nine months have been a rollercoaster as Rose developed a

transient leukaemia and received chemotherapy when she was three weeks

old. She also had a spell in ICU. You wouldn't know it now though.

We are still getting used to her MDS diagnosis but it's getting easier.

I have lots of questions but some are maybe the kind that can't be

answered.... .what sort of life will our little girl have? I suppose

only time will sort that one.

Has anyone else had experience with transient leukaemia ( a.k.a TAM)?

Are there any members in Ireland?

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