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Children with MDS

This topic has 4 replies, 1 voice, and was last updated 17 years, 4 months ago by NervousAunt.

Viewing 5 posts - 1 through 5 (of 5 total)

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December 12, 2006 at 12:29 pm #16342

brendan
Member

Hi
Does anyone have a child with MDS ? I would love to hear from you. We live in Australia and have a 5 year old boy with MDS he also has autoimmune symptoms and an undiagnosed periodic fever syndrome. We feel very lost and sad at our sons condition . The docs are not sure if a marrow transplant is the way to go or if there are other alternatives for children. Brendan is unwell all the time and we feel that there is not enough info or support for parents with children with MDS. I would love to chat to another parent about their experiences wih a child with MDS
Cheers from Anna (Mum to Brendan).

December 12, 2006 at 2:41 pm #16343

eve
Member

read post from billy’s dad – they might be able to give you the hope you need

eve

December 13, 2006 at 4:15 am #16344

riley
Member

Hi Anna,

I’m glad you found this forum. Welcome!

Billy is another child with MDS, and his father sometimes posts here. Their website is: http://www.wcgowacki.com/BILLY88.html

It’s been over 1,000 days since Billy had his bone marrow transplant, and it sounds like he’s doing great!

You can find email addresses for Billy, his mom and his dad on the left-hand side of their website, if you want to write to them and learn more about their experiences.

Nicole

December 13, 2006 at 12:03 pm #16345

Laural
Member

This is a website of another Caring Bridge child who had MDS. He just completed a bone marrow transplant and is doing well and back home currently. http://www2.caringbridge.org/fl/mark/
Keep up the hope…

December 27, 2006 at 6:53 pm #16346

NervousAunt
Member

Hi Anna. My 12-yr old niece had MDS secondary to treatment for relapsed leukemia (that is, the treatment for the leukemia caused the MDS). She had a cord blood transplant in September and is doing well so far. Another girl (about 18 yrs old) from my city had primary (or de novo) MDS. She had a cord blood transplant at the same hospital about a week before my niece, and she is also doing well.

I know that many adults with MDS have various treatment options, but my understanding is that a transplant is the treatment of choice for children with MDS.

I’m so sorry you’re having to face this. It is a very scary disease. Good luck with everything.
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