[Presley's Mom]

i know many people come here with questions about neonatal lupus. It is hard to find answers through the literature that is out there as it is all very redundant. I just wanted to let everyone know that I made a youtube video of my daughter's Battle with neonatal lupus and how it has effected her. On youtube if you search for neonatal lupus it comes right up. I am the only one, literally, in the world that has posted a video about neonatal lupus. Hope you all like it. Best wishes to everone.

 

[BigSis]

Wow thanks for that.
What a battle your girl has been through.

I am a neonatal nurse but have never seen a confirmed case of neonatal lupus.
It was suspected in my sister's little girl because of a peculiar vascular type rash present at birth. The rash gradually disappeared over a few weeks without treatment however.

Very best wishes to you and Presley

 

[Joandublin]

What a beautiful, brave little girl you have there

Thank you for posting about her and sharing her journey with us and the world

Heres a direct link to the video

http://www.youtube.com/watch?v=5Ksr6h4NaJ0

Much love and strength to you and Presley
Joan:rose:

 

[LolaLola]

My children both had awful problems with prematurity especially my Son. I had undiagnosed Lupus and the Paed. realised later that both children were typical neonatal lupus. I am so glad you made this Video!!!!!
x Lola

 

[Raglet]

what a delightful little girl, and utterly beautiful.

Your daughter is so lucky she has such a loving mum to help her through all this - what a journey for the whole family

raglet
give that baby a cuddle from me !

 

[Presley's Mom]

thanks

Thank you for all of your kind words. I try to make update videos when I can. i think Presley has 3 total

Thanks Again, Jennifer Bailey

 

[mysharonna]

Jennifer,

What a moving video. I switched between crying for her pain and smiling at her courage.

Your daughter is absolutely beautiful and very lucky to have parents like you. I will keep her in my prayers.

Sharon

 

[keebler]

Jennifer,

Thank you for sharing. What a beautiful little girl you have.

You and your husband are very special.

I have a handicapped daughter. She is 31 yrs. old and I would like to share a poem with me that I cherish.

http://www.oafccd.com/lanark/poems/heaven.htm

Take care.
Love,
Lyn

 

[sel00]

thank you so much for making the video i was trying to find info when my son was born with neonatal lupus in 09 and i did find it on youtube, such an insperation xxxxx