an update on my niece Lorelei for those who remember her..

Lorelei is now 6 and is doing amazingly well! She was accepted into a trial back in Oct. Her and my sister flew to Maryland for a week of testing and so on. The trial she was accepted too is called The Leptin Trial. OMG ladies she is doing soooooo well! Beyond what they thought it would do for her. It is so wonderful. SHe is off steroids, her diabetes is gone, her basketball size belly is normal now and she is now able to eat more like a normal kid! She could only have 22 grams of fat a day, no sugar, and because her body does not produce leptin on it's own she was always hungry. and when you are a kid with all these issues you can imagine how hard it was. Going to birthday parties and not being able to eat what all the other kids were eating and so on. And all her blood levels are coming back to normal! She won't be cured from this but it is doing amazing things for her. Way more then what the steroids were doing which was making everything else worse. I am so happy for my sister and her family. It has been a long hard road. SHe will never get back the chubby cheeks she used to have, she will always look like a marathon runner but it is what is going on inside that counts! Thank you all for the support during the hard times. I am just so tickled to deliver such awesome news about her!

Hi Brandi

Yes, I remember your early threads quite a while back, so heart breaking too.

However, I am so very happy to hear how she is coping with everything and yes, to be off the horrid steroids is excellent.

What a great story to read at this time of year, makes it even more special.

Now for you to make an extra special fuss of your lovely little niece at Christmas.

Hugs to you and of course, little Lorelei.

With all the negative I needed to post this and hopefully people who know what she went through will smile knowing this little girl is finally getting some well deserved relief! I am so thrilled! She got to pick their christmas tree this year. She picked a 10 foot one! There were a few christmas where they didn't even get to have a tree because she was in the hospital.

Hi Brandi,

Best Christmas news!! I am so happy for you, your sister and her family and to Lorelei. Now she can look forward to a happy long and healthy life.
And wish everyone the very best.

Merry Christmas and to a bright future,

Smilingcat

Wonderful News Brandi! So glad she is doing so much better. There are worse things than looking like a marathoner!

Just glad she is able to live a more normal life now and feel comfortable in her skin again.

That is wonderful news Brandi!

That's wonderful news! Thank you for the update and I'm so glad it's so positive. :)

That's wonderful! Thanks for the updates - what a special little girl to have this whole world of women cheering for her!

Excellent news, thank you! :)

Good to hear, Brandi. I wondered about her.

Thanks for the update!! I am so happy to hear this.

I am glad so many of you remember her story. Again I could not be happier for them! And thank you all! I have tears as I am reading your wonderful comments!

This is so wonderful to read. It was heartbreaking to follow along with your story. I would do anything for my nieces and nephews and I really felt your desperation. How wonderful that the clinical trial has worked so well for her! Thanks for sharing.

I remember and love the positive news!!

I almost hope they don't get approval for this drug so they can afford to keep doing this for her. Not sure how it works though. They go back to Maryland this month to do some more tests and what not to see exactly how she is doing. It is all very good at this point!