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“Precious Gems 16″ – Angel in Training
31 August 2017

Adeline greeted us cheerily as she opened the gate to let us in. The bright and well ventilated home was welcoming. Oscar their Labradoodle*, barked delightfully, excited to see visitors. On the other side of the spacious living room behind a glass divider was 20-year-old Timothy, sitting in a geriatric chair waiting for our nurse. There were two small rooms, each one well-padded from wall to wall, with mattresses on the floor. In one of the rooms, Timothy’s younger brother Anthony, was playing by himself.

Our nurse greeted Timothy and gave him a big hug, but Timothy seemed drowsy and did not respond. Anthony wandered out of his room and reached out for my handbag. Mummy Adeline said “No, Anthony. You cannot take Aunty’s bag.” Anthony then tried to take our nurse’s stethoscope and was also stopped by Mummy. He went to Kor Kor** and kissed him on his head, circled round Kor Kor twice and stood by the dining table. Suddenly, we heard water dripping and saw that Anthony had urinated where he was standing. Mummy gently asked, “Why didn’t you tell me? We could have walked to the toilet.” It was explained to me that when Anthony was distracted, he would forget and these “accidents” could happen.

Timothy and Anthony both have Sanfilippo syndrome, which is a metabolism disorder that prevents the body from breaking down long chains of sugar molecules. Sanfilippo syndrome is an inherited condition and causes significant neurological symptoms, including severe mental disability. IQs may be below 50 and most people with Sanfilippo syndrome often only live into their teenage years, although some live longer. Symptoms include blindness, inability to care for self, mental disability, seizures and nerve damage. It is a progressive disease that will eventually require wheelchair use. Timothy is already blind and needs to be fed and changed.

Timothy was diagnosed with this syndrome four years ago, when he was 16. He has been our patient since and because he seemed to stabilise, was about to be discharged from StarPALS. Sadly, Anthony who is now 15, started to show symptoms. So we decided not to discharge Timothy and both brothers are now under our StarPALS care. Recently Timothy had a fall and had to have stitches on the back of his head. Everyone was concerned, but Timothy showed tenacity and recovered.

Anthony expresses himself through touch and motion and constantly pulls Mummy’s hand into his mouth. Sometimes he would chew on his shirt collar. When Mummy gave him a towel, he promptly stuffed it into his mouth, very much comforted by it. Once before, he even pulled the stitches at the back of Kor Kor’s head.

One would wonder why Adeline, who was already saddled with so much to do and with two sons to care for, would buy a dog to add to the daily tasks. I asked her and she told me that Oscar was bought a month ago because he is a therapy dog. When he is taken for walks, he would mingle and play with kids. However, when Oscar goes on walks with Timothy, Oscar would only walk next to Timothy’s wheelchair and ignore other kids around them. She was especially thrilled that Oscar was very protective of Timothy and would allow the two boys to cuddle and hug him. The boys enjoy having Oscar around and Adeline felt that the improved emotional aspects of her boys more than compensated for the extra work she had in looking after the dog.

Adeline was positive and cheerful throughout our visit. She took time to hug and speak gently with Timothy and Anthony. She had very beautiful things to say about her sons, who are the loves of her life. She has a lot of faith and trust. While the future is unknown, she believes that she will be guided and that she will be able to accept what is given to her. Adeline seems like a very strong woman, but our nurse is concerned. Inside each of us, there is a fragile side. We will need to support Adeline in the ensuing time and our nurse has already started on it, together the rest of our team. I have a lot of admiration for Adeline, a small and petite woman. Small on the outside but with a very brave and big heart! It must have been very difficult for her so far, what more in the months and years to come. We pray that Adeline stays strong, come what may!

*Cross between a Labrador and a Poodle

**Elder brother