Ian – compared to bananas
Now….and then….they grow so quickly and endure so much…..
Love you sweet boy ;).
Passing his White Belt
Ian age 8.5
Birth to Age 11 – Happy Birthday Sweet Boy!
Hi! My name is Jenny and I’m so happy to find your page! My boy has ONLY been diagnosed with Failure to Thrive and long story short, he now has a gtube AND just started TPN through a PICC line at night to help him catch up. The doctors are sending me to a geneticist because they can’t explain why he’s not growing!
However, my sis in law just started a blog for him telling his story and I had a flood of support. One lady mentioned Russell Silver and I read up on it and I got goosebumps! I feel like this is what my boy has! I would LOVE to talk to you! This is my boys blog http://www.hopeforryker.blogspot.com. Please contact me if you have time and I will be following your page.:)
Hi Jenny! Ugh, the journey you are on can be overwhelming – and I am more than happy to chat with you! I will contact you via your e-mail address and we can start there. Lot’s of hugs to you and Happy New Year!
I also was diagnosed with Russell silver syndrome in 1978 and I only weigh 90lbs. It is very difficult to deal with when you don’t know what to expect with this disease. I have tried for years to find any valuable research available, but there isn’t any.
Hi! How are you doing now? Is there any questions you would like answered that we can help you with??
My name is Michelle Fancher and I have 16 yr old boy and girl twins. My son has RSS and was on growth hormones for 10 yrs. I was so touch by your story. Just like you, my son Alex is a fighter.
Thank you Michelle. It is such a pleasure to meet you and so glad we were able to connect. I hope all is well with you and your children!
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02MediaInc.com : The Balancing Act
Global Genes Project - Hope Campaign
Russell-Silver Syndrome Network
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