Children Dying in Drought-Stricken Ethiopia

It is when I read things like this- that I feel that strong tug tug tugging on that rope that was tied around my heart so many years ago. On one end there sits Emily...here in Colorado, going about her life of daily chaos, fatigue, eat, sleep, work, eat, kids homework and to bed, "Lost", type- tap tap tap- sleep again...and then she sees a picture, hears a song, reads an article, reads someone's blog and tug tug tug that rope is being gently pulled to some far away place where just the "eat and the sleep of life" are a very real challenge, where your whole life depends on a clean glass of water.

This reminds me of this incredible video...

Pastor Bob Barr

My husband's father, Bob Barr, was born in Malawi Africa. His brother and sister -in-law still live their and work with SIM Malawi. Their kids are still their and have started Kindle Orphan Outreach. Bob was a pastor of a large non-denominational community church in Fairport N.Y. He died 16 years ago of ALS. Even though Mark and I met in high school and were very good friends, I did not know his dad at all really, which was odd. It is odd to be so close to someone and not really know someone who is so important to them. When his father was diagnosed I was a sophomore in College. I remember getting the phone call and I am pretty sure I said something really stupid because I did not know what ALS was. I did not know that you die from it. I remember Mark was frustrated with me when he called me. We stayed close during this time while Mark left school and ultimately went home to live with his dad during his last years. I know that time with his father is precious. We were dating by the time I actually sat down and had a conersation with Pastor Bob. He was 3 years into the diagnosis and the conversation was done via a computer "light talker" because one of the first things he lost was his voice - wouldn't you know it - the man whose profession was speaking and who had an incredible singing voice- looses the voice before other muscle groups. It is different in everyone. That conversation felt a lot like the "I need to meet the person whom my son will spend the rest of his life with" even though we were not engaged and I was leaving for California, it is like he knew that. (Maybe Mark had told him)

Anyway- he died on April 2, 1991- and we were remembering this yesterday when there was a Frontline episode on ALS called "So Much So Fast". It was too much of a coincidence. The story is a remarkable one (like many ALS stories) of a man who was only 29 when he was diagnosed and he was in love and he got married and had a baby- all while he was loosing his ability to walk, talk, hold that baby, and hug his wife.

They call it an "orphan disease" because there are not enough people who have it to finance the amount of research that needs to be done to provide medication or a cure for this disease. And when you are disgnosed you are lucky to live 2-4 years so people do not live long enough to become really vocal or take up the enormous cause. But this family, that was on Frontline, did. I wish I had a picture of Bob to post for you...but I don't so here is his son. My love. With his baby boy.

HIV Links As Promised

Sorry this took so long to post. I know several of you have been waiting for this...This is a list of helpful links to learn more about HIV and AIDS. Much of this information pertains to living with HIV here in the USA. Its not as pretty in other parts of the world and the stigma is worse in other parts of the world. The stigma is what causes many of the problems and also is at the root of the rapidly growing transmission. If we can stop the stigma here at home, and work on ending it abroad change can occur.

The Elizabeth Glaser Foundation for Pediatric AIDS


NPHRC at the François-Xavier Bagnoud Center in partnership with the Center for HIV Information at UCSF provides the latest and most current information on mother and child HIV infection

From that same site you can navigate to a link that has global and country specific information and links on HIV/AIDS in other countries and around the world.

New York State DOH site: Excellent site with all of the current guidelines on testing, treatment, and psychosocial issues related to Pediatric HIV

One of the better and most accurate site on Living with HIV or for information about HIV on the internet. Used by health care professionals as well as people living with HIV. Not specifically pediatric focused but a lot of great links and accurate information.

An excellent site devoted to women with HIV. A great site for up to date information on pregnancy and HIV, and what your child will be coping with as an adult woman with HIV. There is also useful information on disclosure for children.

A good list (though not exhaustive) of summer camps and programs designed for kids living with HIV as well as their uninfected siblings.

The Children’s Hospital’s Pediatric HIV Program is where I work.

Articles and Links specifically related to adoption of an HIV infected child

This is an article written about international adoption of HIV infected children.


The following two abstracts were written and presented back when there were many children in the USA with HIV who were living in hospitals and institutions (1989,1990). These abstracts show that it is possible to adopt these children and discusses the support systems put in place for this scenario some 16 years ago. This is now commonplace in the USA and there are many adoptive families raising children with HIV.

The first abstract
The second abstract

This is an article about the founder of “Chances by Choice” who is helping to find families for children with HIV all over the world.


Here is the Chances by Choice website.


This is a short article highlighting the fact that children living with HIV in the United States are now living with a chronic condition verses a fatal condition. There are many studies and articles out there that show this change in the long term prognosis of children living with HIV in the US.

This is the link to the AHOPE website.

And finally one of the foremost champions of HIV infected children around the world, Jane Aronson MD, who also has good information on HIV testing in Ethiopian Adoptions.

The World Wide Orphans Site

Giardia, Campylobactor and Polydactyly

This was a post I never completed - I was trying to gather as much info on infectious diseases that kids may come home with from Ethiopia- and since I actually gathered so much info...I never actually posted it here! I will pot here the list of things families have said that their kids have come home with from our CWA Care center- many of these kids at the time had come from the Sodo, Wolaita region of Ethiopia which is in the SouthWestern region.

here is the list:

Giardia
Campylocator
tinnea capitus
iodamoeba butschlii
blastocystic hominis
ringworm
lice
scabies
Chronic Hep B infection
Active TB
inactive TB
other stool parasites
Chronic Diarrhea
Malabsorbtion issues
failure to thrive
malnutrition- refeeding issues
Upper respitory infections including Bronchitis, ear infections and the common cold
Staph infections of the skin
skin lesions with superimposed infections
Scars related to past trauma including treatment by traditional healers, burns (both accidental and purposeful), and abuse
Hives- or allergic reactions
Urticaria Pigmatosa. The individual spots are called Mastocytoma
Milk allergies
abscesses
fungal infections of the toe nails Verses trauma of the nail beds
Emotional and attachment issues
female cicumcision