Tshiamo’s (Setswana name meaning: all is well) journey…

Main problems

1. Sacro coxygeal - gluteal lipomeningocoele (no hydrocephalus) Q05.8

2. Conus medullaris is at level of L5/S1

3. Tethering of the cord with progressive weakness - cord unthetehred in October 2016 at Red Cross hospital

4. Thoracolumbar scoliosis

5. Neurogenic bladder and incontinence of urine and stool - requires 4 hourly intermittent catheterisation

6. Bilateral and intermittent varying hydronephrosis

7. Poor functioning left kidney –split renal function left kidney 2.08% compared to right kidney 47.92%

8. E coli UTI –sensitive to Pip-taz

9. Eczema

10. Charcot joint disease

11. Both hip/s dislocated

History

Tshiamo is a 8 year old girl known to the Paediatric Neurology, Orthopeadic Surgery, Neurosurgery, Nephrology Units of Steve Biko Hospital (Public hospital) in South Africa. She has with sacro coxygeal meningocoele and gluteal lipoma complicated by tethering of the cord which was since operated in October 2016.

Birth history

I was 32 year old when I gave birth to her , HIV negative and was expecting a twin. She was P 2G4A2. The pregnancy was complicated by intra uterine death of the other twin baby at 7 months gestation. Thereafter the pregnancy was difficult. I delivered by Caesarian section at term. Tshiamo weighed 2.7 kg and was noticed to have sacro-coxygeal spinal dysraphism and very large gluteal lipoma after delivery.

Current:

Her medical condition has worsened severely in 2016. This has caused myself (main breadwinner) to take half day position in order to look after her (mainly due to the intermittent catheterization) and also her father who was doing a driver job which was not suited for the condition she is in. our son 15 year old has also now been diagnosed with eplilpsy. Tshiamo may need to undergo amputation soon due to her charcot knee which has become worse now. She suffered burn wounds twice due to nanny negligence.

Our plea to the world:

Our living arrangement is not suited for Tshiamo particularly. The house is way to cramped and she needs to have ample space to maneuvure. We have an approved house plan which is paraplegic friendly and would like funding (monetary)/ or generous persons who can build this house. I would like funding to at least carry us through to end 2018 so my husband and I can start up a business and be able to support them both working from home and been in a position to manage our own time. Our plea is a start up, Tshiamo's average medical expenses only per month which includes, catheters, nappies, sterile goodies, medicine averages between R 2 500 - R3 800 per month.

We send this hoping that some generous persons will hear us out there.

God Bless

Tshiamo's Mom - Joey