Weʼre raising £3,000 to I am raising funds for stem cell treatment in India for my cousin's daughter.
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I am a cousin to Lollie's mum, Tshoganetso whom I am starting crowd funding for. Lollie was born on 18.11.2010 at full term through normal delivery with a significant and prolonged labour with non-reassuring fetal heart tracing. She therefore suffered birth asphyxia (lack of oxygen to the brain) and had neonatal seizures and spent nine days in the ICU where she was managed on phenobarbital (drug) and brain cooling. She was later diagnosed with cerebral palsy and immediate intervention from a multi-disciplinary team of therapies was required in order for her to function. As a result of the cerebral palsy, Leloba has the following developmental impairments:
1. Severe speech delay. She is still completely non-verbal and relies solely on us to know what she needs.
2. Autistic features which lead to huge meltdowns which lead to her harming herself.
3. Oral aversion as well as other tactile hyper sensitiveness and therefore does not chew and only take smooth or blended foods.
4. Coordination problems with a somewhat stepping/limping walk.
5. Sleep disorders which she takes medication for daily.
7. Sensory processing disorder and cannot bear loud sounds, large crowd or being in a car.
8. Has little comprehension of anything and as a result is not toilet trained and still uses diaper and is not aware of danger.
9. Poor gross and fine motor skills and therefore cannot feed, dress or bath herself
Because of the above mentioned ,she has needs 24 hour assistance at home and most importantly as mentioned before ,a multidisciplinary therapy approach of a physiotherapist ,speech therapist, occupational therapist, behavioural psychologist, dietitian, paediatric neurologist and neuro-developmental psychologist
Unfortunately, in Botswana, some of the therapists and or expertise mentioned are not available and as such it has hugely impacted on her progress. The had to seek those not available, from neighbouring South Africa which is a gruesome and frustrating task since she cannot handle the sensation of being in a moving car and has huge meltdowns in all our trips .Earlier this year she has had to undergo an operation for tendon lengthening in Pretoria, this meant travelling to S.A every 4 weeks with a screaming child since the family could not possibly afford flying in addition to hotel accommodation and the hospital bills. Lollie is currently just at home because of the financial constraints that have been incurring since 2011 and because in Botswana there are no specialised centers for kids with special needs .To date my Lollie is still not toilet trained and still in diapers.
Lollie needs to progress to her full potential in order to be functional and independent since she is getting older and needs to be functional .She cannot perform the basic and ordinary everyday tasks like combing her hair ,brushing her teeth, bathing herself , feeding herself and dressing herself. Changing her nappies has become a painful mammoth task since she is has getting older, stronger and more violent.
All of the above cannot come without detrimental effects on her mum and for the caregivers. This has greatly impacted on her mum emotionally, physically and financially. Caregivers ask for a very high wage to be able to look after her while her mum goes to work .Some stay as little as a week because of the huge responsibility that comes with caring for such a child. This brings feelings of isolation, fear, loss and guilt on her mum since even our immediate family cannot handle her special needs and the reality .
A treatment like stem cell therapy would improve her physiological health, physical structure, sensory motor abilities, behaviour , cognition and communication. . Lollie cannot handle the motion of a moving vehicle [sensory overload and over-stimulation]; this has been the most difficult challenge to date since a car is the most used mode of transport. With stem cell therapy this would now become a thing of the past.
Lastly, having an independent functional child is the dream any parent and that is all we require to give Lollie a life near to normal. The primary request is for donations to take her for treatment in India which costs of 7000 US Dollars [which is roughly about P70, 000] excluding airfare and visas.
For further inquiries please do not hesitate to contact NeuroGen center in Mumbai, India on the contacts in their attachment.
I welcome and would appreciate any amount you may be willing to contribute.
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