Lola Ya Bonobo

Category: Uncategorized | Date: Sep 05 2008 | By: lolayabonobo

Hi everyone,

after emailing everyone you suggested, an organisation called facing the world came back with this response:

Dear Ms Woods,

Thank you for passing on the details of this very deserving case.

In order to help with a diagnosis (needed to see if she can come to the UK
under our programme) we will need to have some history:

When was the tumor first noticed.
What has been the progress (describe as well as possible)
Is it painful
What does it feel like - is it soft and squigy, is it hard, is it lumpy?

We will almost definitely need a scan and a biopsy. (But I have sent her
photos to the surgeons)

Facing the World will be able to pay for these but we will need to
investigate the medical facilities locally.

Kind regards,
Sarah

Sarah Driver-Jowitt
Executive Co-ordinator: Facing the World

I’ve emailed Claudine with these questions and hopefully she gets back to me soon. will let you know what happens!! thank you so much everyone for your help!!

3 responses so far

Category: Uncategorized | Date: Sep 03 2008 | By: lolayabonobo

Thank you all so much for your suggestions. I will email these organisations one by one, once I try to find out more information from Claudine.

I emailed a doctor at Duke University and this is what he said…

Vanessa,
This is an incredible case of what appears to be a large tumor…..I  am
just not sure what but may be it is a Burkitt’s lymphoma.  There is no way
fro me to diagnose by picture…..we have people in Tanzania from Duke but
I do not know of anyone in the Congo and I feel impotent to give you any
suggestions.
My colleague John Bartlett here at Duke just came back from Tanzania and he
a director of Duke’s Global Health so he might be able to provide
better insight and you could contact him.   Just not sure what kind of
medical care is available in Congo.
I wish I could be of more help but just don’t know what is available.
John P.

I emailed John Bartlett and he said,

Vanessa, how quickly has this tumor developed?  If it has been very fast (ie days to weeks) then Burkitt’s lymphoma is a good possibility.  If it has been over months, then I would guess that she has nasopharyngeal carcinoma.  A biopsy is needed to differentiate between them.  Based on my travels in East Africa, I think that medical care in Nairobi, Eldoret or Kampala would give her the best chance for care.  Centers in these cities do offer chemotherapy for Burkitt’s, which has a reasonable chance for cure.  It is complicated by the fact that she is from DRC and may have a hard time accessing care in these facilities as a non-citizen.  Sorry not to have more hopeful news, John

**

They were both very fast to respond, which I’m grateful for. So I’ll email Claudine now and try and find out more information to send to the NGOs.

7 responses so far

Category: Uncategorized | Date: Sep 02 2008 | By: lolayabonobo

Just received this post from Claudine:

‘I have had my heart broken by a little seven year old girl called Amazone. Her parents came to me to ask my help. I attach the photos for you to see. How can anyone remain unmoved by her suffering. I did not succeed. I paid for the passage on the only boat that left for Kinshasa, but the Commander refused to let her on board, calling her a ‘freak show’. I stormed on board and asked if he was an imbecile - she has a tumour, it’s not contagious.

So finally today she left for Kinshasa, where she visited 3 years ago. Her father told me they needed to give her 4 injections, but he could only afford 2. He told me the swelling went down a lot (can you imagine?) I wanted to help more, but who would help me? A doctor? An ambassador? A hope chain?

A number of people I’ve approached told me I had better things to do, but how awful human suffering is to watch. I am ashamed to look myself in the mirror. These poor people, who lack a few bills in their hands.’

So I know this is hopeless, and asking for a miracle, but does anyone know of a program, or an NGO, or someone who could help? Even to diagnose it. I’ve written to Duke Hospital, but it’s difficult to diagnose something like this from a photo.

I hear sometimes of miracle cases, of children brought to the US to be treated for a horrible disease - does anyone know how this happens?

9 responses so far