Hassan`s Story

 

 Lubwama Hassan

 

Hassan is a 10 year old boy with severe cerebral palsy which means that he can do very little for himself. According to Doctor`s who have looked at his brain scans, Hassan should not really be alive but he continues to bring much joy to many of us as he smiles, laughs and enjoys life despite his struggles.

After he was born, his mother became mentally unwell and tried to harm him causing significant damage to his brain. He was brought to New Hope Uganda`s baby house when he was just 7 months old after the probation officer received reports from his neighbours that a baby was being locked in the house all day and was obviously screaming a lot! Hassan`s father was having to go out to work and had locked him in the house to protect him from his mother.....

It was difficult to tell at first, just how severely disabled Hassan was going to be. Sadly, as time passed and Hassan was still unable to sit up, roll over, speak or even feed himself, it became clear that Hassan was going to be dependent on carers for the rest of his life.

 

 

Hassan lived at Hope House with many other babies and toddlers until he turned 7 and the management at New Hope decided it was time to build him a home where he could live, with a carer in one of the 7 family groups; David Family. He moved into this house in July 2009 with Auntie Kate and you can read more about this on the page entitled 'Hassan`s House.'

 

 

When Hassan was in the baby house, his Father did come to visit him fairly regularly but as he grew older the visits became less frequent. He did visit in 2009 and was pleased to find Hassan in his new home......he even asked whether, should Hassan die would his other son inherit the house?!!

 





Hassan with his Dad in 2009.

We last saw Hassan`s Dad in early 2011 and he informed us that Hassan`s Mother had died the previous year. Shortly after his visit, Hassan`s Father was admitted into Kiwoko hospital where he also died from conditions related to AIDS. Unfortunately he had stopped taking his ARVs and very quickly became very sick! Although we took Hassan to visit him in his last days, he didn`t seem to recognise or know who anyone was. At the burial, many relatives and neighbours were amazed to see how big and well Hassan was looking!

 As well as not being able to sit, walk or even roll over independently, Hassan really struggled with eating and drinking; it would take his carers hours to get him to eat a few spoon-fuls and he would often choke both on food and drinks. For a while, Hassan was able to feed through an NG tube but this was not a permanent solution to the problem as it had to be replaced often and because of it`s size there was a limit to what we could put down it!

Thanks to a German paediatrician who was working at Kiwoko hospital in 2009 and the hospital`s own surgeon, Hassan was able to have a Gastrostomy tube fitted which has made feeding him and administering medication much easier as well as obviously improving Hassan`s health. Initially Hassan`s gastrostomy tube was really a catheter (G-tubes are not available out there!) The German Doctor ingeniously designed a way of keeping it in the correct position using some rubber bands and a piece of flip flop! Unfortunately this tube frequently blocked and we were very relieved when an
Irish Consultant provided us with a real Gastrostomy tube!!!

 Hassan with his new G-tube and an ingenious

stand to hold the syringe while the food goes in!

Here in Uganda we also don`t have access to proper tube feeds so we have had to come up with our own formulas.........we tend to mix a bit of lots of different local foods and put it through the blender with milk and water  (power permitting!) We are relieved now to have a solar battery that supports the blender so no more mashing and mixing by hand!

Sieving the food after it has been through

the blender so that it doesn`t block the tubes!

Hassan is on several anti-epileptic drugs but unfortunately continues to have daily seizures. After having an EEG and several consultations with a paediatric neurologist recently,  he has been recommended a change in medication. Unfortunately the drug which he has been prescribed is not affordable for us as it has to be imported from the UK. However, we are hoping and praying that we might be able to find a company to sponsor Hassan`s medication in the future.

If you know of any organisations or companies that might be able to help in this way, please contact us on specialneeds@newhopeuganda.org

WHY?

So, why did God allow Hassan to be beaten by his mother and become so totally dependent?
Well, that is a very difficult question to answer. And it is hard to think of God standing by and watching as his Mother banged his head against the wall, knowing that he could have stopped her at any point........but he chose not to......FOR A REASON!
Here at New Hope, we believe that every life has a purpose and that in God`s eyes, Hassan is just as valuable to him as any other human being. He has plans and purposes for Hassan; to prosper him and not to harm him. He allowed Hassan to suffer and become disabled for a purpose and although it is difficult for us to really accept this and fully understand it now, having spent the last 4+ years with Hassan, I have seen God touch many people`s hearts through this precious boy`s life and I am believing that he is going to touch many more in the years to come!
If it wasn`t for Hassan, would there be a class for disabled children at New Hope?
If it wasn`t for Hassan, would there be a community programme for families affected by disability in the area?
And what about all the children (and staff) at our school who, because of Hassan are learning to value and care for those with disabilities?
And then there are those people in the community who are seeing how we care for this dear boy and daring to believe that their Father God may possibly love them after all, despite their imperfections!