01 Jun 2006
We first met early last year but the Operation that he needed could only be done when he attained a certain age. The aim after the op is for him to attend the Hopes and Dreams centre (Community Centre where hopefully B2SL will build houses for the community project) and get the aftercare from the Therapy Centre. I am currently trying to get the op done in Galle instead of Kandy where it is booked. Kandy is a long way from family home and they will incur large expenses in staying up near to the Hospital. Galle is a short bus ride away. January 2007 Up date on Lasindu.
This little lad has been reassessed and the Specialist no longer feels he needs an op but he needs to continue an intensive programme of specific exercises and we are trying to get him some Piedro Boots which have been developed to help people with Cerebal palsy walk with greater stability. A firm in Birmingham have promised to donate us a pair for him. With much encouragement he his now taking steps for himself albeit a little staggery but that reach for independance is SO important both for him and his Mother especially. We continue to support the family and during this last trip his father Lucky showed us his recent near fatal injury. He was on his fishing boat and a line came free and whipped off over the side and nearly severed his arm under the elbow. The scar is deep and wide and it would appear he may have lost the use of his 2 middle fingers. He sustained the injury 6 weeks prior to our visit so it was too late for us to be able to help - we have given vitamin e oil to help the scar to heal.
Annemarie and I were asked to see this little 2 year old boy quite out of the blue when we were packing Food parcels for the Fredrick Hill camp. The mother and father had bought him to the House we were working in to ask for help. It was clear to me, although I have NO medical background, that he had some thing a) very serious and b) possibly genetic.
What a heart wrenching half an hour.I sat on the bed with his mum who had him across her knee and put my arm around her shoulders – she immediately started to cry – you could not only see the distress but FEEL it too. It sticks in my throat just writing this…. I took one of his little legs and it felt totally spongy with no muscle tone at all. His breathing was laboured and it sounded as if he was choking on his own fluids. The father told us how he has 4/5 fits per day and is doubly incontinent. He then took out some pictures of an older brother of nine who had died in April of 2006. The photo was horrific – it depicted a body that was only skin and bone – grossly enlongated and rigid in its posture.
As a mother I have difficulty in putting into words what this sort of scene does to ones maternal instincts – they come rushing to the fore and you just want to make things BETTER – now!
We told them we would do what ever we could…………….I was already convinced it would not be much of any use but these folk must have what ever we can muster to help them. I called Dr Sujeewa Amarasena who is the Head of Paediatrics for the Galle region and asked for his help. This is one nice bloke – he has helped me over other medical cases and goes beyond the call of duty to help us. He told me to be at the Karapitya Hospital at 9am the next morning and he would see us! What a star – my spirits lifted a little, maybe we could get some succour for this sad little family.
Next morning was stifling and very hot, and drove to Galle arriving spot on time. We had to walk the length of this smelly depressing hospital to reach the childrens ward. Sujeewa was doing his rounds and was checking the babies in the special care unit. He came and sat down with us – no privacy – we had collected quite a crowd and the poor parents had to relay their story with all ears around us. He gently got the story from the parents and read the notes they had. Dilum had been seen by the Apollo Hospital in Colombo who diagnosed ‘Menkes Kinky Hair Disease’ it is caused by an apparent lack of copper in the system. The mother carries the defective gene and passes it to male offspring – what a cruel thing! This lady has had 2 male children who are destined for the same fate. Annemarie commented that she thought mum might be pregnant again – when Sujeewa asked her, her eyes filled with tears – abortion is NOT an option in Sri Lanka. I wonder just how much this little family understand of their future ? I asked what we could do to help – put in a feeding tube to help Mum, was the answer – Mum did nt want that – ok anything else? Stronger drugs to stop the fitting? Yes we can pay for that – what are the side effects? Loss of eyesight was the reply – mother said he has no sight now – so that seems a good option – help to make the days a little less traumatic. The drugs previously prescribed are cheap and ineffective so this is something practical we CAN help with – it’s not much but its something positive. Next what about a washing machine – Dilum as I said before is doubly incontinent and plastic nappies are expensive and bad for the rubbish situation. His mother has to change her clothes a lot since she never puts him down for long.
We took them into Galle and bought a twin tub. We paid to have it installed and we will support the running costs for the family. Another NGO gave this Tsunami family a house last year – so at least they have a half decent home. We gave them a food parcel and they will be top of the list for a visit in February when I return. The image of this poor little boy and Mum with tears pouring down her face will be with me for a long time to come – a brave family.