Monday, May 18, 2009

I want to grow up until I die

Below is a post from one of the pediatricians at the Soweto hospice, Louisa Ferreira.  Read it carefully- it's important...

The saying that always hold true to my heart is the one that says” To much is given, much is expected”.  It humbles me to see how this saying resonates into the visit from our Sister Hospice – the Suncoast Hospice. The drive and passion and above all the love and dedication shown by our “American family” has been nothing but celestial.  The American people are very fortunate to have such devoted and caring people working within their own communities.

Soweto is a developing area filled with a great amount of destitution and poverty.  It has had a very difficult political past and it has begun to pick itself up out of the trenches. However our HIV pandemic in South Africa is a huge stumbling block, our infection rates are so high, that the mere plugging of the leaks in the proverbial dam wall is no longer effective.  Our dam is ready to break and it is causing great devastation in its path.

Currently, we are having a great number of infected children and AIDS orphans.  Our children’s caregivers: their mothers, fathers, aunts, uncles, brothers, sisters, grand parents and neighbours are dying and so are the children themselves.  HIV is a disease that wears many masks and it infiltrates itself into every person in the family so violently and without restraint.  Our Hospice has been hard hit by the virulence of this disease. The majority of our children will do well if started on medications early enough, but for those who have poor social circumstances (which is too common) and are unable to be compliant on their medications; or who have been started on the medications too late in the disease process, their future remains a very uncertain place for them. Many of them will end a life far too young and with so much undeserved suffering and pain.

I had a 13 year old male child, called Gift, recently in our Soweto Hospice who is HIV positive and TB infected, he is becoming more and more resistant and poorly controlled on 2nd line ARV (Antiretroviaral) treatment due to poor  social circumstances, poor drug compliance and also for defaulting treatment.  Gift was refusing to take his medication due to the great pill burden of taking more than 15 different medications per day.  This in turn has caused him not only to become resistant to his ARV’s but also his TB medications. Currently Gift is an inpatient at a local Infectious disease hospital, because he has multi drug resistant TB. He is away from his community and family and will have to stay admitted until he is no longer infectious, this can take many months or even years. 

An important thing Gift once told me was that despite his sickness he wanted to grow up until he died.  What wise words for such a young boy, the profoundness of its simplicity and honesty.  We cannot cure everyone but we can allow our children to experience their childhoods and to alleviate their suffering and provide them with enough peace, comfort and support that they can truly: “Grow up until they die”. This principle I think is our Mantra for Hospice.  We want despite undefiable odds to allow our patients to experience LIFE and to live their dreams despite the final outcome that one day they may be taken from their families and die due to their illnesses.  Our children need to experience their child hoods and to grow up before they die! Hospice is a place of living, a place for life, a place of living even for some in the umbrella of death.

Thank you all for your generous support to our country and Soweto Hospice, your generous donation extends past its monetary form to that the angels can only speak of.

GOD bless you all on your life’s journeys,

Regards and Respect

Dr Louisa Ferreira MBCHB DCH(SA)



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