Tuesday, September 16, 2008


This morning one of my friends lost her little girl to death.
I'm not sure exactly at this point what went wrong.
Ramona was born in February 2007. Shortly after her birth she started running high fevers and had other complications. She was diagnosed with Hemophagocytic Lymphohistiocytosis, or HLH, for short.
In October of 2007 she received a bone marrow transplant and in January 2008 was 100% engrafted.
During the duration of her treatment she also developed a severe brain infection that left her with very little sight and seizures. She also appeared to have other damage, because she didn't use her arms or legs and rarely opened her eyes.
Laura was such an amazing mom. She stayed with her for the months and months while Ramona was in the hospital being diagnosed and treated. A fierce mother lion who learned to be her daughter's advocate and caretaker. Rarely leaving her daughter's side.
One day I asked Laura to meet me at a park for a pic nick and play date. While we were there we talked about her dreams to have a new home, one where Ramona could be on any floor and not feel left out. She expressed the desire to not have Ramona ever feel that she couldn't go anywhere in her home. Wow. I was struck by these comments. I had always assumed that Ramona wasn't aware of things, and now it struck me how lucky she was to have a mother who knew when she was awake, taking things in, paying attention, or when she was sleeping. I'm just amazed that a mother could be that in tune with her baby like that when the baby appeared to the rest of us to always be in a constant state of just laying there with her eyes closed.
Laura is the most amazing mother I've ever met. She's taught me so much about motherhood, never giving up, tenderness, loyalty, strength, courage.
Yesterday they entered the hospital to start a new diet treatment they hoped would stop the seizures that Ramona was still having. Last night Laura wrote in her Caring Bridge Journal how Ramona was not liking it, and had been throwing up. She hoped Ramona wouldn't throw up in the night when she was sleeping, because she might not notice and that really worried her.
This is the last I've heard. I'll update later when I know more.

Please say a prayer for this family.


Ginabear said...

I am so sorry Jen. I keep saying this because I cant find the words to express how hard it must be to lose a child. I know she was your friend and I just loved the pictures you took of Ramona. Big hugs to you my friend!

Anonymous said...

I am so sorry. This is so heartbreaking it brings me to tears and I didn't know them personally. It is so sad that that beautiful baby girl is gone...her parents must be devasted.

You gave them a wonderful gift. All those beautiful pictures you took of Ramona. They will have those to remember how precious she was.


Natalie said...

That is so heartbreaking. I feel for your friends and will definitely keep them in my thoughts and prayers. :(

Michelle said...

A beautiful post about a beautiful mother and daughter. My prayers will be with them during this difficult time. Hugs to you and to them.

Anonymous said...

I am so glad you took such loving photos! My eyes are wet. I will pray for them!

Luv you,