22Mnth old son with MDS

[Sharon]

Our young son who is 22months old has just been diagnosed with MDS (8 days ago) at this very scary time we feel the need to take in as much information as possible on this dreadful disease.Finding other parents/sufferers to share and gain knowledge from is impossible and this is the only site we have come across.
Age is on my son's side and donors for a BMT has already been started with blood taken from us his parents. The wait is agony another 3 weeks and we will know whether we are a tissue match or not
Our son is an inspirtation to us with his hemoglobin at it's lowest being 3.1 and highest being 9.1 he is alway's smiling and laughing looking at him you would think what a happy, robust child he is. He has gone through so much in the last year with infection after infection but somehow still manages to smile and enjoy life to the fullest.

Hoping to here from someone, anyone soon
Sharon

[Nigel]

Hi Sharon
thoughts are with your and yours. This is so often a disease of the more elderly and seems such a dreadful situation for one so young. There is a lot of information around from the website and links. Keeping fingers crossed here for an early match and BMT for your son; I had a stem cell transplant (PBSCT - Peripheral blood stem cell transplant) two and a half years ago in my late 50'ish and forging ahead - there are lots of success stories out there!

Wishing your son the luck he so surely deserves.

[Nigel]

Hi Sharon
thoughts are with your and yours. This is so often a disease of the more elderly and seems such a dreadful situation for one so young. There is a lot of information around from the website and links. Keeping fingers crossed here for an early match and BMT for your son; I had a stem cell transplant (PBSCT - Peripheral blood stem cell transplant) two and a half years ago in my late 50'ish and forging ahead - there are lots of success stories out there!

Wishing your son the luck he so surely deserves.

[Maureen]

Hi Sharon

This must be a very scary time for you and your family. MDS is rather unknown in this country but is coming to the fore more and more.

When my husband was first diagnosed in November 2005 this website did not exist; I found The Aplastic Anaemia Trust to be useful and found their website and support very helpful. I remember receiving a newsletter from Bryony Dettmar who runs the trust and one of people sharing their stories was from a family who had a toddler with MDS. I don't know if this will be any help, Bryony can be contacted through www.theaat.org.uk (email - support@theaat.org.uk).

My husband is now very well, having had a transplant in September 2006. Sharon, will be happy to speak with you on the phone or email if you think this would help, even just to listen - sort of know what you're going through, the future must seem very uncertain. Will be thinking of you and if I can help in any way please let me know.

Stay in touch and if you would like to talk I can let you have my phone number and email address.

With best wishes
Maureen

[Sophie]

Dear Sharon,
I am not immediately aware of any children with MDS amongst the patients I know in the UK, especially as young as your little boy.
So, in order to find another family in the same situation to share thoughts and support with them, I would indeed follow Maureen's recommendation, but would also try to leave messages on the MDS Foundation website (link to site below - click on my www button) or www.mds-foundation.org (link to Forum is top left hand corner).
The users are mainly in America, but you may find a family in the same situation, as quite a high number of patients/families are registered there.
Please do call others, or myself (number on the main page of the website).
If you don't already have documentation on MDS, I can send you a Patient Booklet.
Or if you require any other details, please don't hesitate to ask.
Wishing you lots of courage and strength - do keep in touch.

Warmest regards,
Sophie - Patient Liaison

[Angela]

Hi SharonI am so sorry to hear your little boy has MDS. I was diagnosed with MDS in 1997 at the age of 20. There wasn't much information about it back then but one website I used to look at was the Anthony Nolan Bone Marrow website www.anthonynolan.org.uk this has experiences and information on from families suffering with MDS. I know how scared you must be feeling for your son (I had a baby in 2004 and was worried I had passed the MDS on, even though i know it isnt hereditary and can not be passed on it is still there on my mind).
I hope your son is feeling better and has received treatment as your post is back in January.
If you would like to talk to me, or me to listen to you or if I can give you any more information, please dont hestitate to contact me.
Kind Regards
Angela

[yvette]

Hi Sharon,was sorry to read about your son being diagnosed recently...this site has made my husband and I reassured that others have encountered this condition, and many are encouraging stories. Our 8 year old son has was diagnosed back in November last year..unfortunatley his brothers weren't a match, so he is currently waiting for a BMT but while he is doing quite well, they are using this time to find him a good donor from the international panel...he has regular bloods to check his counts but at present, his platelets are @ 39, neutraphils are up a little @.8....so we continue to wait ...and wait some more!:-" ...keep the forum up to date on your son...
Regards, Yvette

[tina leese]

Hi SharonI totally understand your worry my grandson Regan was diagnosed with mds in 2003 he is now six years old. He was diagnosed at only 9 weeks old and had a stem cell transplant in september 2003 at only 6months old. He is now full of energy and lives life to the full you would never know that he had been ill he truly is an inspiration to us all.
The doctors told us that the chances of this happening to further siblings were zero as this mds was so rare, and so after 6 years in September this year 2009 I had another grandson and a brother for Regan. We have just been told that now this baby also has this terrible Illness MDS. They are currently searching the Anthony Nolan register to look for a donor. Please let me know how your son is today. Please keep in touch