Paediatric MDS & Monsosomy 7 caused by a GATA2 gene mutation

MDS can affect children in some very rare cases. Please post here if you are a parent of a child with MDS.

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janetgreen
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby janetgreen » 17 Jan 2014 21:52

I am so sorry for your loss and my thoughts and prayers are with you and your family. RIP Leah xx
Wife of Ken, 57, diagnosed with MDS (refrac cytopenia, multi-lineage dysplasia with 5q- and del of 12 and 13) in Jan 2011, was transfusion dependent. Stem cell transplant on 14th December 2012 but sadly passed away 20th July 2013. Live in Barnsley.
MollyP
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby MollyP » 18 Jan 2014 22:38

Dear Vicky
I am so sorry to hear your sad news. I know your faith will help you coming to terms with your the loss of your beautiful daughter but it is still not something any parent should endure.
Thinking of you, your family and all that knew Leah.
Love
Molly
Xxxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Still w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
mumoffour
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby mumoffour » 19 Jan 2014 00:23

http://youtu.be/STC4vICRczM
The day before Leah died one of her friends compiled this short YouTube video showing photos of her 'journey' this past year.
Mum to Leah who was diagnosed in April'13 with MDS & Monosomy 7 caused by a GATA2 genetic mutation, aged 15 years. Sadly Leah died of transplant related complications in the N. Ireland Children's Hospice January '14 . :cry:
janetstanford
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby janetstanford » 20 Jan 2014 15:57

I am so sorry for the loss of daughter leah hard to loose the old the young harder I have watched the youtube video and yes she was inspirational anybody would be living an showing an examples with a bone marrow issue never to be denied
I have to say I cried
my thoughts are with with you all
Janet
janetstanford
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby janetstanford » 20 Jan 2014 15:58

I am so sorry for the loss of daughter leah hard to loose the old the young harder I have watched the youtube video and yes she was inspirational anybody would be living an showing an examples with a bone marrow issue never to be denied
I have to say I cried
my thoughts are with with you all
Janet
chris
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby chris » 20 Jan 2014 16:15

Dear Vicky

Very sad news indeed and my condolences to you and your family and friends - especially your son who was her donor as he may have some very mixed feelings at the moment.

With best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
mumoffour
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby mumoffour » 09 Feb 2014 17:30

Thank you for your expressions of sympathy.
Last Summer Leah and I started blogging on a private Facebook page called My Journey. I have continued writing on this page from time to time since Leah died. I now feel a need to tell the story behind the story as there was so much that couldn't be said publicly while Leah was alive in order to protect my daughter's privacy. Over the past weeks and months some of my friends who don't use Facebook have said how much they would like to have access to my writings. I have now transcribed my entries since 27th December 2013 onto a blog page and I plan to post on this in the future as things come to mind. I find that writing about my daughter's illness and treatment journey helps me and hopefully it might help others too.

http://victoriawhyte.wordpress.com/
Mum to Leah who was diagnosed in April'13 with MDS & Monosomy 7 caused by a GATA2 genetic mutation, aged 15 years. Sadly Leah died of transplant related complications in the N. Ireland Children's Hospice January '14 . :cry:
mumoffour
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby mumoffour » 18 Jul 2015 22:51

I was very pleased earlier this year to read about a new five year research study into hereditary myelodysplasia, which is similar to the type that my daughter had.

http://www.bci.qmul.ac.uk/news/grants-a ... ci-blizard

I made contact with the research team and wrote this blog post about my meeting with them earlier this week.

https://victoriawhyte.wordpress.com/201 ... -a-donkey/
Mum to Leah who was diagnosed in April'13 with MDS & Monosomy 7 caused by a GATA2 genetic mutation, aged 15 years. Sadly Leah died of transplant related complications in the N. Ireland Children's Hospice January '14 . :cry:
Russell
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene muta

Postby Russell » 19 Jul 2015 11:27

Hi, I read your earlier posts and was so sorry to hear of Leah's passing. I appreciate that much of what your family went through is private and I'm sure that even now it 's still very fresh in your mind. I hope that Leah's story will encourage others to come forward and support further research. MDS in children and teenagers is enormously rare and your experiences, whilst tragic, could prove valuable to others We have a Twitter page for MDS and so any inspiration that you could add to that would be really appreciated as I'm always looking for ideas to get people taking. Thanks in advance for any help you can offer.
Stay strong

Russell
[color=#0000BF]Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
mumoffour
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Re: Paediatric MDS & Monsosomy 7 caused by a GATA2 gene mutation

Postby mumoffour » 29 Dec 2017 23:56

Dear Russell,
I must apologise profusely for taking 18 months to reply to your post, please forgive me. :oops:
I think that you are inspirational, having come through three transplants and then going on to run all those marathons. I read about your achievements while Leah was still alive and I told her about you to try and give her hope that she would actually feel well again one day. The pain from her spinal fracture was particularly debilitating and quite distressing for both her and me.
Since I last posted on here I have become quite involved with Genetic Alliance UK and Rare Disease UK. They very kindly paid the expenses for my husband and I to travel to England on two occasions to attend workshops as part of their Building Rare Communities project.
http://www.raredisease.org.uk/news-even ... y-of-leah/
A few months ago I set up an online Facebook support group for patients and families affected by a GATA2 genetic mutation and I also have a GATA2 twitter feed on which I post relevant research articles and items of interest. I have received support from researchers and clinicians in the UK, Germany, Canada, USA and Australia.
Leah is still the only person in N. Ireland to have been diagnosed with a GATA2 mutation as it is ultra rare. There is now nine families in this online support group, only one from the UK, the others are from around the world. It's been quite busy in December as two families currently have children/young people going through BMT and were feeling very isolated.
If there is any way that you think I can help other families in the UK with a child or young person with MDS please shout, I'm always a bit wary in case I'm perceived as the 'angel of death' because my child did not survive.
Regards,
Vicky
Mum to Leah who was diagnosed in April'13 with MDS & Monosomy 7 caused by a GATA2 genetic mutation, aged 15 years. Sadly Leah died of transplant related complications in the N. Ireland Children's Hospice January '14 . :cry:

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